Welcome to My Diary
Posted on: 14/11/2014
Yesterday was Connah's 13th Birthday. He officially became a Teenager. It was another milestone along his incredible life. I say incredible as the Doctors all said that he would not see 6. It has been a very long and eventful journey as all of you know from reading these updates. The journey is not over. In February we go down to London for our yearly scans. We Pray that we will be able to report more good news to you all in March. Thank you all for continuing to support us over the years. Love to you All. Debbie, Jim & Connahxxx
Posted on: 04/09/2014
Hello Everyone. We have just returned from our Summer Holidays in Spain. Had a Smashing time. Connah spent lots of time in the pool, most of it racing Grandad or Nana up and down and sometimes underwater. We devised lots of games including a mini assault course in the pool with timed races against Grandad and some of the nieghbours. All done to keep Connah healthy. We also had fun doing river rafting at the Mariposa adventure center, lots of time at the beach, Cowboy World where Connah had great fun with his two friends Nathan and Max who live in Spain. We have found more places that do Organic food so that's a big help. Not too bad when we drive over as we can take a freezer box full of organic meat with us. This year there was an inflatable fun park floating off the beach in Mazarron. All the kids loved climbing on it and bouncing off things, great for keeping fit although the "life jacket" worn by all did rub a bit under the arms, but still Great Fun. We had sunshine every day and no rain. So all in all a great holiday. Connah had his treatment throughout and kept up with all his supplements and looks tremendously healthy. He started Year 8 at Prestatyn High School today and we have told him "nose to the grindstone" this year is an important learning year. Thank you for all your support and we hope you all enjoyed your Summer as much as we did. Love Debbie, Jim & Connahxxx
Posted on: 23/05/2014
What a Great update this is. The Denbighshire Performing Arts Competition went really well. Thanks to the Judges Claire, Deanna and Rob and Well done to Gail and all her helpers for putting on a smashing competition. It was really nice to see faces from last year performing. Liverpool, Anglesey and North Wales School of dance put in strong performances but look out as Connah will train even harder from now on. He lost out by a point on 3rd in his Solo routine, but Josh his solo instructor was very happy with him. Connah is 12 at the moment as you move up to the next group the competition gets harder. Good to see Brittany Hood Bladon at the comp, sorry to hear its her last year, we will all miss you. Connah’s duet with Rhiannon went really well and good thing was he did not drop her on the lifts. They both danced really well and came in first place. Cops and Robbers routine was good but did not get in the medals. The Group dance with the “Rockettes” went really well ad they deservedly came in first and to cap it all Connah did not drop her in that one either. Thanks Gail for all of your hard work in kicking us into shape. A great day was had by all. The next competition is in Liverpool on the 13th July, so if you are in the area come along and support and see Connah dance, we are sure you will love it if you have never been to a dance competition before. Hope you all like the photos. Love Connah, Debbie & Jim xxx
Posted on: 22/05/2014
Hi All, You are probably wondering why you have not seen or heard from us for a while! All is okay, Connah is still very well, very pleased to say. We are fighting are still fighting his cancer full on, but please take a moment to say a Prayer for Stephen Sutton and Reese Puddington who after long fights sadly gained their Angels Wings. God Bless their Family and Friends. Connah has been very, very busy (which means we have too!), with his dance and football. He has also joined rehearsals the school show “Bugsy”. So we end up being the taxi for him and the “girls” for all the extra dance practices that they have been doing. Even though Connah is only classed as “Stable Disease” and not Remission we think of ourselves as very lucky. So has been Connah’s routine for the last few weeks. Once you have read it you will understand why we have not been posting recently. Friday: Full day of school. 3.30 – 4.30pm rehearsal for school show. Straight to extra dance practice with Rhiannon for 45mins. Off to Gail’s Dance Studio for one hour of dance practice before competition. 6.15pm home for supplements and food. Saturday: Off to Rhyl for football match with “Rhyl Commandoes FC”, played full game. Back home for shower, supplements and lunch. Out at 2.30pm to pick up Sophie & Louise for dance practice until 4pm. Drop them at home and pick up Rhiannon 4.30 – 5.30pm for duet dance practice. Home for shower and tea and then an hour on X-Box until bed. Sunday: Up at 08.30, supplements, breakfast and school homework. Dance practice for his solo dance for 30mins in conservatory. The “neighbours love us”. Off to dance practice with Rhiannon 11.15 – 11.45. Then with dance instructor Alys 12 – 1pm for “Cops and Robbers” routine. Thanks to the weather being so bad the planned sponsored bike ride to raise funds for the dance costume fund was cancelled so home for lunch. Then out again 4 – 5pm with Josh for my solo dance. Must work harder, great moves in “Street Dance”. Josh my instructor is really a good dancer! Monday: Full day in School, Nana and Rhiannon picked me up at 3.30 and off we went to Auntie Sue’s house for dance practice, 45mins on Duet and Group. We had been told by Gail to make stronger moves and do the dance lifts higher so that’s what we practiced. Home at 5pm for tea then homework. Tuesday: School then 4.45 – 5.30pm with Gail and the girls for our 11 – 18’s dance exam class, yes lads “I am lucky”. Home for 5.50 change out of dance clothes and into football kit and off with Grandad to football training with the Commandoes. Home for 8pm and dinner and practice Miss Jacksons spellings before bedtime. Wednesday: School. PE today, we had tennis, which was fun. Nana and Rhiannon picked me up and then back home to watch a video of our dance routine before practice 4.30 – 5.30pm. Then Rhiannon stayed for tea, which was all organic “as usual”. All the girls in the dance group know about my cancer and deafness, but they don’t treat me any different, so its not “Connah who has cancer”, its just Connah! Then Grandad started my 2 hours of alternative treatment whilst Nana took Rhiannon home. Thursday: School: Then straight to dance class 4 -4.45pm. This is the Group practice with “my five Ladies”, okay the girls! Then home for Auntie Jean and 1 hour of Rieki, homework, tea and then 2 hours of my treatment before bedtime. Friday: School, stayed behind to do rehearsals for the school musical “Bugsy” until 4.30pm. Then off to dance practice with Rhiannon to practice the lifts as Gail was cross with us, hope it goes well later, 5 -5.30pm. 6 – 7pm over to Gail’s Dance Studio for more practice and then home for some “well deserved dinner” and TV! Saturday: Off to football match with Grandad. Some big footed clod stud on my foot. I remember Nana saying to Grandad before we went out “make sure Connah does not get injured”!!!!! Back home for a shower, lunch then Rieki with Auntie Jean. 3 – 4PM dance practice with Sophie and Louise for “Cops and Robbers”, plus solo and exam moves. 4.15 – 5.15pm dance practice with Rhiannon. Then home, shower, dinner and then into Rhyl to see a show with Mrs Potter from Bodnant and Corrine from dance, it was well good. Sunday: Well this is the start of the last week before the Denbighshire Performing Arts Championships. So its practice, practice, practice and more as Liverpool Dance Groups are really good! So today is 4 hours of dance practice. Nana and Grandad cannot keep up with it! Everyone cannot believe I have cancer and was at one time in a wheel chair! But our motto is “Never Give Up”. If you can get up, get up and fight it! I have “Stable Disease” Not Remission. It will be 8 years this Aug 3rd when we were told that “The prognosis is not good”. Well Doctors I am still here and getting stronger and stronger and getting on with life. Love you All. Connah xxx
Posted on: 09/03/2014
The scan results came back on Friday from our trip to London. So here are some "extracts" from the report. The Summary first, "One would never know to look at Connah that he had ever had anything wrong with him". "The investigations all look favorable"."Although there is still imageable residual abnormality on the scans I hesitate to call it disease". "There is less uptake of the tracer molecules, indicating that whatever is left is APPRECIABLY less active". "The disease has not behaved in the way we would predict". Technical side: MIBG Scan, mild uptake seen in the partially calcified soft tissues masses (this is an improvement from Avid uptake). FDG Scan, No FDG avid disease (no uptake). Ga-Dotatate Scan, Overall 60% reduction of uptake in all areas. No trace in bones. So that's the condensed version as the report is 5 pages long. Its not gone yet. However Connah is no longer being classed as "Stable Disease", something significant has happened since the last scan 12 months ago. The NB cells that are left (and there are incredibly few now) seem to be switching themselves off! So Praise God and pass the ammunition. It feels like if we can keep fighting for one more year we can finally "turn the lights out on Neuroblastoma". Debbie, Jim & Connahx
Posted on: 04/03/2014
What a week! Monday all packed up and on the train down to London for a week of scans at UCHL. Four scans, four days, lots of trauma. Day one is always the worst, fitting the cannula. Connah hates needles, twice the Dr got it in his arm but couldn't find the vein. Two strikes and your out in the cannula game so in comes Dr. No2. They decided that the best way forward was to use the "laughing gas", worked a treat, I asked for cylinder to bring home. Due to a botch job by two trainee nurses in Italy just before Connah was diagnosed. Took "6" stabs at taking blood, Connah is now "needle phobic". That done we were off down stairs for our first MiBg infusion. Then off to Planet Organic for Connah's favourite lunch "organic lasagna". Back in the afternoon to see Dr. Mark Gaze. He thought Connah looked great. I asked if he knew of other children like Connah to try and give us an idea of what the future might hold for us. Mark said "I know of no other child like Connah. We know of no one that has not gone through the full course of treatment ie, no surgery, no stem cell transplant, no radiation, no immunotherapy and survived like he has, in our view "he is unique"! In that respect no one can predict what may happen in the future. So with that thought bouncing around in my head we walked up the 5 flights of stairs (keep exercising whenever possible) for the first scan. I sat reading Percy Jackson whilst Connah lay for almost an hour with the scanner moving up and down him. This was the routine for the next few days. The only difference was the type of infusion being injected in. We stayed at Paul's House near to the hospital and met other children/families who were having treatment. Connah struck up a friendship with Adan who is having treatment for a Brian tumour, we wish them all the luck. So Friday it was last scan, up to the children's ward, cannula out, packed and onto the train and back home for "late o'clock". Now you would think Saturday would be a lay in and recuperate! Not a chance. It was race round, Connah hair cut, shopping, prep food and into the car for a drive down to Llandudno for the "Got to Sing, Got to Dance" show with Gail's Prestatyn Dance. Several rehearsals and then into costume and on with the show and what a really great show it was to. Dancers from 6 different dance studios putting on some spectacular performances to raise money for charity, well done everyone who contributed. Connah did get a lay in Sunday morning, but not for too long as he had dance "solo" practice at 11.00. So there we are up to date. We now await the scan results, no worries, what could possibly go wrong, we have a "unique" survivor who dances like "Fred" (almost), has a hair cut straight out of "peaky blinders" and got his first Valentines card this year. Love you Connahx
Posted on: 24/01/2014
Hello everyone and Happy New Year to you all. Lots has been going on since just before Christmas. We had the visit to meet JLS on their Farewell Tour in Liverpool, which was great as a lot of Connah's dance routines have been to their songs so it was really good to meet them before they all went their separate ways. They were all smashing fellas and so friendly. Thanks Guy's. Then it was the end of school, the start of the "horrible" weather and off on the plane to Spain for Christmas and New Year. The weather was much better in Spain, although still a little cool, definitely no swimming! We had a smashing Christmas Dinner with our Friends and Connah had loads of presents that we had brought over with us. We even carried (well I did) a huge chocolate log and a Christmas cake (both Organic) and made by our Friends at "Cupcakes" in Prestatyn (we just supplied all the organic mixture). The hand luggage weighed a ton! We all enjoyed it, including the Neighbors who have put orders in for next Christmas. At New Year we went to the "New Royal" and had such a great time none of us wanted to leave when the taxi came at 1.30am. Connah had been chatting to an English lad who was playing the guitar in the Spanish group that was playing and we had all been up dancing and having a fine old time, sore heads next day, thanks Richie!! Then it was back home and get ready for the start of the new term at school. Connah has been fitted for an amplified hearing system so that he can hear the teachers better in class (no excuses now). Thank you Flintshire Council. So it has been normal routine of school, dance, football training and treatment. You may remember that last September we went on a tour of Manchester City Football Ground and had a really good day out. At the end of the tour we left a copy of Connah's book (The Amazing Cancer Kid) with the receptionist to pass on to his favorite player Joe Hart. The following day we had a telephone call from Diane (the Receptionist) to say that Connah's book had been taken to the training ground and passed on to Joe. Nothing else was heard. Then last week I received an e-mail from a Lady called Sarah from Manchester City who said that they were aware of Connah and what he had been through because of the book and would we like to come to the Training Ground and meet the Players and watch the training. So yesterday we set off in appalling weather to the Carrington Training Ground. Fortunately we caught a break in the clouds and it was dry for almost all of the visit. Sarah gave us a rundown on what was going to happen and we met Manchester City Legend Alex Williams who was in charge of taking us round and briefing us on different aspects of the facility and the training. We then went and lined up outside the changing rooms and waited with our permanent markers and shirts ready for the players to come out. The first one out was Joe Hart and it was just amazing to see him for real and not either in HD on the TV or from 100 feet away in the terraces at the match. All the Team were great and all stopped to have a word, sign our shirt and have a photo. I didn't get chance really as I was on the camera jostling for a space to take snaps, but Connah had a great time of it. I did manage a few words in Spanish to Alvaro Negredo a few words in Arabic to Samir Nasri and a few words in "jibberish" when I shook hands with Sergio Aguero later on. We then went out on the pitch and watched the training for a while, Connah kicking a couple of stray balls back to Jesus Navas and then we went through the changing / boot room, the gym and then up to the viewing room where we could watch more of the training out of the rain. As we were all sat down having a cup of tea in walked Sergio Aguero who handed out shirts signed by the whole team and a few other things. It was great meeting him and Alex told us that this was very "unusual" that a First Team Player would take the time to come up and meet everyone, so we were very honoured and pleased that he had taken the time. At the end of the visit we went outside and gave a brief interview to the Man City cameraman on Connah's condition and the book who was videoing the visit and will be sending us a copy in the next few weeks. So thank you very much to Sarah, Alex, Manchester City and the whole of the Team for a Great day out and lots to remember and for Connah to tell his mates about at school. Plus to top it all last Saturday the team Connah plays for "Rhyl Commando's had their first home win 2 - o and Connah played the whole match. Well done Lads. We wish everyone the very Best for the year ahead.Love You All. Debbie, Jim & Connah
Posted on: 04/01/2014
Dear All. We have just returned from spending Christmas and New Year in Spain and arrived home to the very sad news that Zac had passed away. We have been in contact with the Family for a number of years and when not in touch have followed Zac's progress through different treatments through contact with Zac's Grandmother and reading his website. Our thoughts and prayers are with the family. They did everything that they could and all of them fought so very hard to beat this horrible disease. Love to you all. Debbie, Jim & Connahx
Posted on: 11/09/2013
Wow, where did Summer go? One minute we were watching Connah being presented with the Endeavor Award at Bodnant School and then it seemed in a flash we were dropping him off outside the High School Gates and he was dashing in with hardly a "Bye" or a look back! Obviously lots happened in between but it all paled into insignificance at the momentous occasion of seeing the back of his head disappear into the throng of "young adults" waiting to start at their new school!! Still lots did happen and hopefully I can remember some of it for you. This time going to Spain we drove down to Plymouth to catch the ferry and stopped off for the night at a really nice hotel close to the Town of Ashburton where I had done some of my Army training years ago. We did not take the day driving round places where I had jumped off bridges, trekked across moors, abseiled off viaducts and swung from tree tops (screaming more like Cheetah than Tarzan)!but drove swiftly on through the rain to the docks. We all had a great time over in Spain, lovely sunshine every day, lots of exercise in the pool and we took that much frozen organic food with us we still had bits left at the end. Highlights of the holiday were daily wrestling matches in the pool that Grandad won, although it is becoming more of a close call these days as one gets stronger and the other one gets older! Go-karting was good fun when my Sister Susan (Great Auntie Susan, emphasis on the Great) and her Son Cameron came over to stay. Had a really smashing day out at the La Mariposa Hotel where we went quad biking and kayaking, spectacular views and bags of fun. Our Guide Bob was really good and stopped off along the trail to give us lots of interesting bits of information. Thanks Bob. We spent several days on the beach, well we were on the beach, Connah was mainly in the sea! We did some snorkeling in the sea and in the pool. Monty came with us as well and he wore his claws right down running rings around the pool going nuts at next doors cat, who watched his rantings with a lazy eye from its perch on top of the wall that could not be reached!! Then it was back on the boat and into the "fray" of High School and Newspapers. As soon as we arrived home, Sarah from the BBC was in contact with us about doing a Radio interview for Connah going to High School, so we expected her to just turn up and ask a few questions to put out on the airwaves, so completely caught out when she turned up with a cameraman. I stalled for time whilst Deb's rushed into the bedroom and did a quick "60 Second Makeover", no chance of that for me, scruffy jumper and tea shirt and lots of wrinkles!!We also had interviews with the Daily Post, Evening Leader and the Journal, who all wrote some really good articles and plugged Connah's book "The Amazing Cancer Kid" which comes out on the 10th Oct. Good job we waited until we came back from holiday to buy school shoes as someone had had a growth spurt and now is even taller than Nana!Going through pencil cases and buying new pens, protractors, erasers etc.. took up more of the weekend but by Monday we were almost ready for High School on Tuesday and then we found out that Connah wasn't starting until Wednesday so panic about new hearing aids being fitted on Tuesday morning over, thank goodness. A brief THANK YOU to the person who took a sharp implement to our car door and did £200.00 worth of damage whilst it was parked in the Hospital Carpark, made the day just a little bit more special!! And then there we were infront of the school of the School gates, Summer over! On the health side, it was decided that Connah would not have a scan at the usual 6 month point would come back after a year. Deb's and I were more than a bit concerned about this, even more so when Connah has complained about "twinges and odd pains", but no lack of energy and an appetite would shame "Desperate Dan"! Anyway when we got home we got in touch with our friends and they kindly arranged to do a quick ultrasound to check things out. Nothing could be seen apart from the one tumor, which still refuses to give up and disappear even though there is still no blood flow going through it, so panic over (Ha as if the panic or worry will ever be over). So we continue on our journey and once again thank everyone who is out there supporting us. The book will launch in Oct, so will update on that nearer the time. Am trying to do more on "Face Book" so contact us on that (James Broom), tried "Twitter" and cannot get the hang of it, don't know if anyone is out there or not, Sculley and Mulder had more luck finding Aliens! (@connahsappeal). Dave is working on a new website for us so expect a new look shortly and that's enough for now. Love to you all. Debbie, Jim & Connah
Posted on: 03/08/2013
Hello everyone. Well God is still smiling down on us and Connah has survived another year with Neuroblastoma. Even though his disease is classed as "stable" and there is only a small amount left there is not a day goes by when we don't worry about it returning. I managed to get back from Yemen in time to attend Connah's School leaving service and the Year 6 Awards Ceremony. We were very surprised and proud when Connah was presented with the School Endeavour Award. Each student had to put someone forward for the award and almost everyone picked Connah. Thank you to all of the Teachers and Staff that have helped us through our time at Bodnant, especially from "Chief Wong". Anyway we are away at the moment and having some fun in the sun. Don't worry we packed all Connahs supplements and organic food in a freezer bag and brought it with us. Seven years doesn't sound long when you say it, but it has been a long road for all of us, whether it will get easier or harder when we start High School next month is yet to be seen. We thank everyone who has supported us and helped us get this far and hopefully see us through to the defeat of this horrible illness. Love to you all. Debbie, Jim & Connahxxx PS. Stafano, Connah spends 20 minutes in the sauna every time we do treatment.
Posted on: 12/07/2013
Hello Everyone, Amazingly its almost the end of Connah's stay at Bodnant Secondary School. Over the past few days he and his year have been going to Prestatyn High School on an induction. I spoke to him on the phone and he was telling me about all the stuff they were doing and then he said "Guess what, we made fire today" Oh no I thought one day there and burnt the place down already! It was okay he said we did it in Science it was really cool. Debbie said that she watched him go through the school gates and although he is 4' 10" he looked like a little minow surrounded by Big fish. So that all starts in September, before that hopefully we will all get a decent summer break this year, without, rain, sleet and floods! Love to you All, Debbie, Jim & Connah. After writing this update: We saw the very sad news about Adam Bird on his website. Our Hearts and Thoughts go out to All of his Family and our Prayers are with Adam.
Posted on: 13/05/2013
Hello everyone. Just a quick note to say how well Connah did yesterday at the annual Prestatyn Dance Competition. He and his partner Rhiannon came first in the duet. Connah came second with his solo dance and then third in the "Commercial Disco Group". It was a long day, but well worth the time to see him do so well. Well done to everyone who took part and to everyone who worked so hard to make it happen. Love from Debbie, Jim & Connahxx
Posted on: 13/04/2013
Hello everyone. Have not updated for a while so I thought I should bring everyone up to speed. Connah and Debbie went for scans in February and also had bloods done. Connah’s bloods came back all within normal ranges, still a little low on the Neutrophils side, but still within the range of normal. The scans showed that the main tumor was still in residence but again with reduced SUV Max uptake than the previous scan. Nothing new growing and one area of uptake that had been a concern previously has gone. So all good news there. Dr Gaze said that Connah was looking extremely well and fit and recommended that we scan in 12 months time rather than 6 months. Connah has been doing well at school and has been keeping up his dance, football and swimming but has dropped gymnastics for doing wall climbing down at the High School Leisure Center. Talking of High School that is fast approaching on the horizon and will be a “Big” marker in Connah’s life, slightly more so than most children. We all went away to Spain over the Easter holidays and took Monty with us, so we avoided the snow and the freezing cold winter weather and spent sometime with friends. We keep up the treatment whilst we are away and I’m happy to say that we have found an “Organic” shop in a town close to where we stay and also an Organic fruit and vegetable market. Connah had a good time playing with Kye and they even got Debbie to go in the pool, brrrrrrrr still too cold for me! Love to you all. Debbie, Jim & Connah.
Posted on: 13/01/2013
Happy New Year everyone. We had a smashing time away in Spain over the Christmas and New Year period with lovely sunshine most days and we all had a nice time relaxing. We arrived back on Monday the 7th in time for the start of school on Tuesday and the rush started. Connah was going on his first trip away from home ever with the school where he would stay away from home. So whilst he was in school we spent the day preparing: Pre-cook 6 organic dinners, filter 5 liters of water, prepare 3 organic breakfast and mix in seeds, pack fresh goats milk, fill specimen bottles with 3 lots of supplements for 3 times a day, pack organic bread, salad and sandwich material, allergy medicine. Pack clothes for every eventuality, Spiderman torch, games, shoes etc.. Wednesday morning Connah arrives at school with 4 bags and a 5ltr bottle of filtered water and written instructions for all his requirements. Mrs Williams (Connah's Teacher) asks if he is going for a month? Debbie says "You should see us when we are going to London for a week of scans"! All the kids pile onto the coach, there are kids with tears, Parents with tears, lots of waving on both sides, Connah is chatting with his mates and never even looks out the window!!! So Mrs Williams diligently phones us with updates of how thinks are going and to assure us that Connah is fine (has to leave messages on the answer machine as we spend two days and nights having some retail therapy and a couple of meals out). On Friday we are back to meet the bus and receive Connah plus case full of dirty wet clothing as he gets off the bus having had a great time. Full of stories about being down a mine and climbing up a rock face under a waterfall (and slipping and bruising his hip)and doing canoeing (and being pushed in and bruising his leg) and dressing up in his scary skeleton onesy and creeping into the girls room with his spiderman torch (which beams a spider onto the wall) and scaring the girls and Mrs Williams and then creeping back to the room and placing his red trainers under the bed of his mate so he got into trouble and not Connah (nice one and no bruises). So a really good time was had by all and a BIG Thank You to Mrs Williams, Mrs Laing and the Staff who looked after Connah and helped with all his dietary needs.
Posted on: 01/01/2013
Hi All. Well it's Connahs Nan.Jim is the one usually to do the New Year note. Well first may we say HAPPY NEW YEAR to you all. We are doing very well.We are in Spain.and celebrated two New Years Eves. We were out so it was very late getting to bed but Connah was full of life and had a smashing time Dancing and Singing.Which brings me to a sad note can we give a few minutes to think of all the Family's that have lost children in 2012 which has been far to many.We wish and hope that we can save more in 2013. As you all know Connah has been 6years last August and never been in remiission and we get told by Doctors.that he is a BLIP,what do thay mean?We do ask ,but thay just look at us? Connah and I go to all meetings in London to do with NB and again Connah a child with live cancer as he puts it asks WHY HAVE I GOT CANCER?And gess what !Thay never answer him. Well we will be back again .Connah says I WILL NEVER GIVE UP I WILL MAKE THEM! ANSWER ME. He is down to 2 days a week know on his P D T and we hope to see Dr Gaze in Feb for scans. Then he to scan once a year. It has been 3 years since we have seen an Oncologist. It has now been none stop for 5 years even while we are away. Can we all give a few minutes for all so,of the children that are on treatment and wish them well. BEST WISHES. Debbie,Jim, and Connah. xxxxxxxxxxxx PS. We would like to send our sincere condolences to Arild and his Family from Norway who very recently lost there Son to NB.
Posted on: 24/12/2012
We wish each and everyone of you a Very Merry Christmas. To all of those who are fighting and doing your best to survive our hearts and thoughts are with you all. A special thought goes out to Adam Bird and Family who are having a tough time of it at the moment. God be with us All. Love Debbie, Jim & Connah.
Posted on: 13/11/2012
Hello everyone. Today is another "Milestone" on our journey in living with Neuroblastoma. Its Connah's eleventh Birthday. We all had big hugs first thing this morning not only to wish Connah Happy Birthday but to take a moment to say "Thank you God" for for giving us the guidance to get this far. Then its was the normal Connah into "where's my presents"? So we had some cards and a couple of presents before school and will no doubt have more to open tonight when he gets in. We all had a smashing time over the half term break in Spain. The weather was not brilliant but then again it was the end of October. We took Connah's "Bestest Best Friend" Ashley with us and they had a great time, even getting in the pool almost every day (so it wasn't that cold). Auntie Sylvia and Uncle Nils also flew in to be with us and we all made a grand time of it. Connah is doing well at school and still doing all his normal activities and as from last night we swapped gymnastics for indoor wall climbing with Danny down at the Leisure Center in Prestatyn. We had a really good time and all the children who have been attending for a while helped Connah with the ropes and how to put on the climbing gear, so can't wait until next week! Would just like to thank Hakan, Tarik and the rest of "the Paris Boy's" who cycled from London to Paris to raise funds for Connah's Appeal and managed to raise over £1,000. Thanks lads for undertaking the grueling journey and thank you to everyone who supports Connah in any way. Love to you All. Debbie, Jim and Birthday Boy Connahxx
Posted on: 27/09/2012
Hello everyone. Its been a while since we updated Connah’s News so I have twisted my own arm to make the effort as you “Connah’s Support” Team deserve to know what’s happening. Debbie and Connah went for scans in late July. The needle part (as usual) did not go well. At the end of the week Connah and Debbie returned home and started to pack for our trip over to
We all had a great time. Connah made a new friend on the beach and took some old friends to the water park and also to the beach. We went to see a “Monster Truck” show that Connah and I could have performed better in the back garden with a couple of “Tonka” trucks and a kid’s scooter! Connah and I also went snorkeling and had great fun watching the divers swimming along about 30 meters underneath us. Connah got to drive the boat back and one of the divers got stung by a jelly fish. We all had a great time around the pool and best of all it only rained once all the time we were there.
During the whole holiday Connah kept asking “What do think the letter will say with my scan results”? Then he would say “I hope it says I don’t have cancer any more”, that’s what we hoped for too but we are very aware of the situation and very grateful for Connah’s condition. We know that it can all change at the “drop of a hat”.
So the holiday ended and we sailed back home into a cold wet mist off the
To cut a long story short the outcome was Connah still has a tumor 5 x 5cm with a small amount of activity locked up inside it. Nothing new has developed and there is a small decrease in activity. Situation “Stable Disease”. So on the one hand good news that Connah is stable and the “incredibly resilient to all forms of treatment known to Man & Woman” is dormant on the other hand one “getting larger every day young boy in tears as he had built himself up to thinking that he would this time be free of the monster in the cupboard.
Any way we had a Big Group hug and a chat about things and we have reduced Connah’s treatment to two nights a week, which gives him a little bit more freedom, but we will keep an eye out for any changes and we have agreed with Dr. Gaze to increase the time between scans to 9 months rather than 6 months.
Connah went back to school the following day for the start of his last year at Bodnant before he goes to High School. He was really excited about seeing his school friends again. Thanks for the message Ethan we all hope you are having a Great time in
So as the saying goes “onward and upward” its back to school, homework, football, dance, gymnastics, treatment, making school dinners (organic, the school kindly help us out by letting Connah bring it in and take his supplements), more dance, more football, I don’t know how Deb’s copes with it all when I am away. Oh and to add to the pot adolescent tantrums seem to have started early in the Broom household, lucky us! Love to you all, Debbie, Jim & Connah
Posted on: 03/08/2012
Hello everyone. Unbelievably another year has gone by. We now stand at 6 years since Connah was diagnosed with Neuroblastoma and started his treatment. As you may re-call Debbie and Connah were down in London last week for scans, we are still waiting for the results, however Connah continues with his football, dance, gymnastics, eats enough for 2 horses and continues to grow so all is good. We had Connah's school report and apart from being much improved this year he had 94.5% attandance and only missed 12 days, which were mainly down to scans and hearing tests. So all in all things are good at the Broom household. But not a day goes by when we don't talk about something or someone who has this horrible, nasty illness. Every day some niggly little voice will get into your brain and say "what if tomorrow brings back the pain". You never learn to live with that, you just have to block it out as best you can and say "thats not going to happen". To everyone who has helped and supported over the last 6 years a Big Thank You and to all those Families who are in this fight with us remember "Never Give In" Neuroblastoma doesn't take prisoners!!! Love to you All. Debbie, Jim & Connahxxx PS Don't forget about the Conference on the 6th October in London.
Posted on: 25/07/2012
Hello everyone. Just a quick update to say that Connah is down in London for his 6 month scan. If we have stable results from this scan we will be extending to yearly scans. Connah met up with his old friend Dr. Saad (Connah calls him Dr. Magic as he shows Connah tricks). He will be home Friday and then we will have to wait for the news in a few weeks time. Love to You All. Debbie, Jim & Connah
Posted on: 09/07/2012
Hello Everyone. Just thought that I would give you a quick update on what has been going on with Connah recently. A couple of weeks ago we had the end of season football tournement in which Connah's team played. They all did a really good job and Connah just missed scoring a goal. Just like to say thanks to John, Sean and Robbie for giving up their time to train the lads all season, especially in this miserable weather. Connah has also been keeping up his dance and took his exams last week (still awaiting the results). Connah's treament still goes on 3 nights a week and we are off down to London in a few weeks for scans. Last Friday was the school award night and Connah was "treading the red carpet". The School presented Connah with the "Prestatyn NSPCC Community Endeavour Award" for his help in the Community. So that was really good, I wonder who will end up dusting it!!!! When I was returning to work this time I dropped him off at school and I said "see you in 5 weeks" and he said "see you in Year 6"! Connah is really excited about moving up into year 6 its like sitting at the top table at "Hogwarts", no one has told him yet that sitting at the top means it gets harder not eaiser, more homework and less time for "day dreaming"! Any way all is well at the moment just waiting to see what news the scans will bring! Love to You All. Debbie, Jim & Connah
Posted on: 03/07/2012
Last week a young girl called Olivia from Scotland was taken away by this monster of a illness that shows absoloutly no mercy. Her Family tried everything they could to find a way to beat it and Olivia fought hard against it. Please if you can find time on Thursday to send some thoughts to Olivia's Family and take a while to think about the other children still fighting hard to beat this illness, do so. It will be time well spent . Love to you All. Debbie, Jim & Connah
Posted on: 11/06/2012
Hello Everyone. During the years that we have been going down the treatment road of dealing with Connah's life with cancer. We have met or been in contact with many Families that are in the same situation that we found ourselves in. Far too many of the Families have not had a good outcome no matter how hard they have fought.
One of the Families that we have recently met along our journey is Revsa & Halit Pars and their Family. Their Son Eren also was suffering with a form of cancer. The whole Family showed great kindness to Debbie & Connah when they were down in London having scans and invited them around to their home where Connah enjoyed playing on the computer with Eren and his Brother. The Love, Support and Closeness the whole Family showed had a big impact on Deb's and we have kept in contact with them over the months since we met. Tragically Eren lost his fight with cancer. Please if you have a moment, spend it sending your positive thoughts to help Eren's Family through this devastating period. Hopefully before my return to work we will be able to travel down and meet up with them again. Love to you All. Debbie, Connah & Jim
Posted on: 19/04/2012
Hello everyone. Its been a long time since I updated Connah's site, thats mainly because he has just been doing "boring normal kid stuff" which is great news for us and him, but not really much interest to everyone else out there! However we did go down to UCLH in London for our 6 monthly scans at the end of February. We didn't put anything on the website until I arrived home from Yemen, unfortunately I was away much longer than we had planned on! Any way the news is: No new growth. No new disease, but very slight trace uptake in the normal areas. Dr. Mark Gaze has told us that he is very happy with Connah's condition and everything is stable. Words which are worth there weight in GOLD, however we again were hoping that we would finally get a "clean sheet". We are very aware that what we have in Connah's condition is no less than a "miricle" compared to what might have happend, but we still go forward with the goal and the positive thought that one day we will get that "clean sheet". Love to you All. Debbie, Jim & Connah
Posted on: 05/01/2012
Happy New Year to Everyone. Everything has been at a "whirlwind pace" since just before Connah's Birthday. A local newspaper phoned us up and asked if they could run an update of Connah's story on his 10th Birthday. The story was done extremely well and there were some excellent photo's of Connah on the front page and inside. No sooner had we finished reading the article than the story was run in several Major Newspapers followed by a phone call from ITV Daybreak who duely arrived at 5.30am the following morning to do a live broadcast, followed by a second broadcast later in the day. BBC soon followed up a few days later with TV & Radio interviews. Then another e-mail from Germany. A TV Station called RTL wanted to come over and film Connah for one of there programs. The crew spent the whole day with Deb's and Connah with interviews with Connah's School Teacher, our GP Eamonn Jessop, Gails Dance Studio's and Dad Chris. Channel 5 have also been in contact and will run an interview sometime in the New Year. This along with all the preparations for Christmas made things very hectic. Christmas was a quiet affair with some time spent away from phones/computers/work, but not away from the weekly home treatment regieme. Now we are back at school and looking forward to February when we go once again for more scans. Top of Connah's whish List from Santa last year was "Not to have any more Cancer". Well lets keep our fingers crossed and see what February brings! Please spend a few moments thinking of all the Children that have this horrible disease and lets Pray that they all get to have the present at the top of thier lists, which I'm sure will have been the same as Connah's. Love to you all. Debbie, Jim, Chris & Connah
Posted on: 05/08/2011
Hello everyone. We had some good news from the scans. The amount of disease in Connah's body has reduced. Only by a little bit but a reduction no less and as there is only a small amount left reducing that last bit is really good news. Thank you very much to all of you who support us and send Connah positive thoughts. Love Debbie, Jim & Connahxxx
Posted on: 03/08/2011
Hello everyone. At one time we never thought we would see a year and now with God's good grace we have seen 5 very memorable years. 5 years ago today Connah was diagnosed with this horrible disease, which he still has inside him. Debbie, Connah and Sylvia returned from having a week of scans down in London last week an we await the results. However our Grandson Connah amazes us every day with his appite for life (and food)! He does everything that anyone else does and thouroughly enjoys himself. A few months ago Debbie sat him down and spoke to him about the Cancer that was still inside him and he he took it inhis stride and said, "yes but I'm getting better every day and one day we will be able to stop doing treatment at night and then it will be gone"! Well thats how we look at it too, one day it will be gone! Thank you all for your support over the years. Please keep it up, we need you all. Good luck to Cory who is having surgery tomorrow and to Adam has just started his treatment over in Griefswald. Love to you all. Debbie, Jim & Connah
Posted on: 21/07/2011
It has been a while since I last updated and I know that some of you check to see what is going on regularly. Always take long gaps as a good sign and that things are running along in a normal manner. When I say normal I mean normal for Connah, school, gymnastics, dance, football, more dance, homework and playtime. For us it means the constant battle with emotions, every time we hear of another child getting sick it brings to the surface the old fears and worries about relapse. The self doubt that your not doing enough and on and on it goes. However life’s not all hand wringing and apathy there are lots of good bits! Connah has been practicing really hard these last few weeks to improve on his 3rd place in the dance competition held at the Nova. Last week was the winners evening again back at the Nova where all of the 1st – 3rd places went to dance their routines again and receive their medals. It was a smashing night and everyone was delighted to see that Connah had “beefed” up his solo performance. On Saturday night it was the annual Awards show in Rhyl where all of the Prestatyn Group dancers and Musical Theatre Group go to put on the end of year show. Once again Connah put on a fantastic performance in his solo dance and everyone cheered the roof off. Well done to Manon for winning Gayle’s Prestatyn Dance Studio’s Most improved Dancer Award.
It was a very late night and on Sunday morning Deb’s and Connah had to be up bright and early to get on the coach to go over to
Deb’s and Connah will be off down to
PS I forgot to mention on Saturday morning (prior to the Saturday night Rhyl Annual Dance / Musical Theatre Show) Connah was at his gymnastics club for a competition and won a medal there!!!
For Physical Education Connah’s school report read: Is developing co-ordination in both gym & dance. Performs basic skills of rolling, striking, kicking and applies in a variety of simple games! We put this down to "they must have been looking at the "Clark Kent" version of Connah Broom when they wrote his report!!!
Posted on: 18/06/2011
Hello Everyone. Just a quick update to let you all know whats happening with Connah. Connah continues to do well and his disease is stable according to the scans from last February. He is coming towards the end of year 4 at school and is looking forward to moving up in September. Last weekend he took part with his friends from Prestatyn Dance Studio in a compition and came 3rd in the solo performance (wearing his "Usher" t-shirt) and 2nd with his group. They danced really well and we were very proud of him (I will download some photo's shortly). He has a few more compititions coming up so we are hoping for even better results to come. Connah's class have been given a voucher for a tennis coaching lesson tomorrow down at the Prestatyn Tennis Club so we are off there tomorrow to see if he can become the new "Fred Perry" (Andy Murry but with style!). Love to you all, Debbie, Jim & Connahxx
Posted on: 15/05/2011
Well done to Sylvia who bravely walked round the Balmoral 5km’s last month to raise over £1,500 for the J-A-C-K Foundation and for Connah’s Appeal. As you can see from the picture, walking 5km’s dressed as a chicken looks no easy task. The weather as usual on the day of the race was challenging, going from a light breeze to windy gusts and a heavy rain. Finishing in less than one hour was an excellent time to bow out on. Once again well done Sylvia and Nils and thanks to everyone who supported. Debbie, Jim & Connah
(Note from Sylvia)
Now it is left for the younger ones in future. My running shoes are hung away, but I will do the organization for future runs. Scott said he will run in a Gorilla outfit for me next year. So we must all look forward to that!!
I do thank everyone who supported me within the
Posted on: 09/05/2011
Unbelievable! As you know Connah goes to football training on Saturday mornings and then sometimes plays a match on Sundays. Most of the time he is on the “substitutes” bench and comes on during the second half. Last Sunday the team was playing in a one day tournament with a short break between games. There were no extras on the team. Connah played 3 x 40 minute games and played really well (according to Deb’s as I was not there). At one stage he was knocked to the ground and the Team Coach, John wanted to bring him off, but after a short pause and a few tears he got up and played on and sometime later took out two members of the other team (that’s our Lad)! After lunch he played in the park with 3 of his friends for 2 hours before coming home for a drink, at that stage Debbie called “time out” and he came in for dinner. Some of you who read this will say “so what’s the big deal”? Well the big deal is that any child who is carrying a 5 x 5cm tumor inside them would do well to play a game of football for 40 minutes for a child to play 3 times that “its spectacular” and is a testament to his attitude to living a normal life.
Debbie and Connah are traveling down to
Posted on: 04/05/2011
Two years ago I was transiting through
For more information on Jack visit "The J-A-C-K Foundation website"
Posted on: 17/03/2011
Hello everyone. This is just a very quick update until I get home from Yemen and tell you what has been going on. Connah is fine and apart from driving Deb's crazy with his constant request of "feed me" all is okay. Connah has re-started doing gymnastics, which we had to stop when he first became ill. We will update you all on the scans when we have the complete report, but think about it for a second "re-starting gymnastics", playing in the local football team, full time school, eats enough to feed a Regiment of Cavalry and their horses! What do you think the scans will say? Love to you all, Debbie, Jim & Connahxxxx
Posted on: 06/02/2011
Hello everyone. Today Sunday 6th February 2011 was a very big day for Connah and all of us. Today he played for Prestatyn Athletic football team. He has been going to practice and training sesscions for the last two seasons but has not be able to find a team that he could fit into. So at training on Saturday he was asked to play in todays game. He had a good game and played all of the first half and came off at half time as someone stamped on his foot. All the team played very well and we won 2-0. We are really proud of him especially when I ws standing on the touch line cheering him on and another boy who I didn't know walked up and said to the Team Coach "Is that Connah Broom playing for the team"? A couple of years ago we never thought that we would hear words such as those being spoken.
Everything else is going fine too. Debbie and Connah went to see Alexander Burk in Rhyl and spent the whole time up dancing infront of his seat, (got a bit too carried away and had to be dragged back before falling over the balcony). We are going to Connah's Class Service next Friday at school. He is doing very well at his dance class's and we are awaiting his latest exam results, whch he took a couple of weeks ago. At the end of the month Debbie and Connah are both off to UCHL for scans. So finger crossed. Love to you all Debbie, Jim & Connahxxxx PS Please send some positive thoughts to Adam Bird who is going through stem cell transplant at the moment.
Posted on: 08/01/2011
Hello everyone. We hope that you all had a Fabulas Christmas and we Wish you All the Very Best for the Year Ahead. Our Christmas was not much fun sorry to say. I was back at work and on Christmas Day Night decided to open one of my presents, a box of chocolates (from a well known high street store) after eating several I thought to myself “these don’t taste all that good”, I was right and spent the next 3 days glued to the toilet seat! Debbie and Connah were suffering worse. They spent 4 days cuddled up indoors barking like dogs with, headaches high temperatures and runny noses, good job we had had our Flu Jab’s! So not much Christmas cheer in the Broom house, but we shall make up for it when I get home. Connah is now back in school with all his friends and glad to have someone besides Nana to play with!
Debbie and Connah are off down to Ramsgate shortly to support the “Alfie Appeal” who are launching an organic recipe book. This is an initiative by Sarah & Dean Gough, to give parents of children who are in cancer treatment an alternative way to give nutritious and good tasting food to their children. We all think that good diet plays an important part in helping our bodies to fight this disease. A number of high profile personalities will also be attending and we hope to get some good pictures to show you how it all went.
As we mentioned previously we are off down to
Posted on: 25/11/2010
Hello everyone. Just want to update you all on what has been happening recently. Connah is fine and is enjoying school. Last Tuesday he went on a school visit to Speake Hall where he learnt some interesting facts about the Tudor’s. Last weekend he went with his Dance School to do an exhibition for the residents of one of the big care homes in Rhyl. All of the dancers put on a good show and it was really appreciated by the residents. Last weekend Connah also had a quick ultra sound check prior to our visit to London on Wednesday. Nothing except the primary tumour was visible and that we were very pleased to hear has no blood flow going into it. We will need a CT scan to confirm it, but it sounds like the primary tumour may be dead!!!!
On Wednesday we all travelled down to University College Hospital in London for a meeting with the top UK Professor of PDT and the Head of Nuclear Science at UCH. They were both amazed at Connah’s condition. We have been trying to see someone from the PDT Dept for approximately 2 years and thanks to Deborah’s Sister Sylvia, David Longman from the Charity “Killing Cancer” and our own persistence we eventually reached the right person and got an appointment and Dr. Mark Gaze facilitated the meeting. We took some of the equipment that we use and described the treatment that we conduct on a nightly basis during the week and the change in Connah’s condition from 3 years ago to the present day. Connah went off to the playroom to play on the Wii after he got bored with the animal figures in the office. The Professor was very interested in what we had to say and explained to us a little more in depth on how PDT actually works (see Sunday Times online to see a video and interview on how PDT works and progress being made). The Professor explained that if we had charted Connah’s progress with regular scans on the same equipment (our Polish Scans don’t count) we would be in a better position to be able to say that the PDT treatment has been successful in treating Connah. Now if you have been a constant follower of Connah’s progress you will know that this point has been a bone of contention between us and the “Oncologists” at Liverpool and Manchester over the last 3 years as they have refused to scan Connah on the grounds that (1) its invasive. (2) Unless he shows symptoms of disease progression there is no need to scan. Forget PDT they won’t even discuss it and would not even refer us when asked in May this year. So we were absolutely over the moon when the Professor stated that Connah should now be scanned on a 6 monthly basis to chart his progression. So a scan will be conducted in February. After that we will slightly reduce the amount of treatment that we give Connah. If on the scan in February we do not see any NB Cell activity we will then be able to use the “R” word. Although technically with the life style that Connah leads and the lack of conventional treatment over the last 3 years we are fairly confident that we could use the “R” word now. But let’s not put the cart before the horse.
So after the results from the ultra sound and the meeting in London, which went better than we could have imagined, we travelled home last night very tired but very happy. We also took the time to have lunch at “Planet Organic” just around the corner from UCH and loaded up the bag with organics thanks to a tip off from Sarah Gough on where to find it. Connah went off to school this morning completely oblivious to the importance of the meeting that we had to travel all the way to London and back on the train for and why we are so happy at its outcome and so frustrated that certain people had not listened to us at all during the last 3 years. The moral of the story for Families reading this is “Never Give Up” pursuing what you think is right for your child. When some doors slam shut in your face another better door my open when you least expect it. Please keep us in your Prayers for reaching our next objective in February. Love to you All from Debbie, Jim & Connah.
Posted on: 17/10/2010
Hello everyone. Sorry for the delay in updateing the website but we haven't been well! No not Connah, he's infused with the endurance of a duracell battery rabbit, he just keeps on going and going. When I got home home from Yemen Deb's was full of a cold and then we went for our week away in Spain and I caught it and have had it ever since. So with looking after each other and doing the nightly treatment and taking Connah to all his different social events the time for updateing the website just slipped away!
Anyway, everyone had a terrific time up in Scotland. The night was really good and well organised by Sylvia & Nils. The First Minister of Scotland was Excellent with Connah and the other Families. He took the time to talk to each one and have his picture taken and gave a talk on his support for the Nueroblastoma cause and we really appreciate his support as there are so many worthy causes out there that it is terrific that he takes such an interest in ours and in Connah particularly. So thank you First Minister and good luck for your future endeavours.
Our week away in Spain went very well. Deb's made an unfortunate mistake of asking Connah's teacher to provide some homework to do as he was missing a weeks school. She took this to heart and gave us enough along with reading books to fill a small backpack! So off we went with 3 suitcases packed mainly with organic food and suppliments and a couple of pairs of shorts. We all had a smashing time. We stayed in our Neighbours holiday home for a few days and with our relations Linda and Tony for the other days. Connah loved it in the sea as he loves being in the water, of course Grandad had to go in as well even though it was about -30 (well + 22 actually but it just felt freezing when it hit your toes and sensitive areas!) and the weather was just nice not too hot and only rained one night. Connah asked if we could spend more time there and we said we will see what the Doctors say in Novemeber when we go down to London. We even went to see where Great Granma used to live and met some of her old friends. It was soon time to come home and back into the routine of school/dance/drama/treatment/homework/chess club / Welsh Club, oh and lost a tooth this week too! (tooth fairy has still not been as someone is being a bit stropey since he came off his hols, maybe tonight! Connah is in good health and as I have said has energy off the richter scale, however we know its still there, like the shark in "Jaws" circuling just below the surface. Connah still bruises very easily and the bruises last a long time, the marks under the eye's come and go and the lump in the stomach is there as a constant reminder every night when we are doing treatment. But we move on and every day that ends in sleeping in our own beds is a good day. Oh guess what Connah has joined the Spanish club as well at school so he can learn the language for when we go back next time, you can't stand still with Connah! Love to you All. Debbie, Jim & Connahxxxx
Posted on: 02/09/2010
Hello everyone. Today is another Big Day for us, Connah starts back in Year 4 at school. He has been really good at getting up around 7am all through the school holidays so lets see if this continues now that school starts. He is really looking forward to seeing all his class mates again and swapping stories from the holidays and a bit apprehensive about meeting his new teacher! We went away in the camper for a couple of days to
Connah is practicing very hard at the moment with Tara his instructor on his dance routines, which he will be performing infront of the “First Minster of Scotland” at the J-A-C-K’s Fund Summer Ball in Aberdeenshire in September. These last few days of holiday he has been helping (off and on) Deb’s in the garden with his friend Daniel. Monty has been chasing round protecting the garden from low flying birds, which he has taken a dislike to for some reason! All in all, apart from the weather a good summer break. Love to you all. Debbie, Jim & Connah xxx
PS Adam Bird www.adamsappeal.org has just undergone surgery to remove his primary tumour so please say a prayer for his speedy recovery.
Posted on: 06/08/2010
Last night we had some very sad news from Alfie Gough's Mum Sarah. Little Alfie past away last Thursday morning. No one could have fought harder than Alfie and his Family who have done everything that they possibly could to beat this disease. Through everything that he endured he continued to smile and laugh. Please all say a Prayer next Tuesday for Alfie. God Bless Alfie.
Posted on: 03/08/2010
Hello Everyone. It seems an age or possibly just the the blink of an eye since we were sat writting "3 long years ago today". Another year on and Connah has achieved so much: One full year in school with 97.4% attendance, excellent even for a child in perfect health. One more year at Gail's Prestatyn Dance Studio and being part of a trophy winning dance group "Electric Blue". One year of receiveing the "Radio City Child of Courage Award. One more year of fighting with Doctors to get the treatment recognised. One more year of football coaching in all weathers at Prestatyn Football Club with Coach Trev and his team . One more year of loosing and gaining teeth. One more year of growing taller (almost as big as his Nana). One more year of cuts, scrapes, bruises, oh and a "verrucca". One more year of home treatment 5 nights a week almost every week of the year. One more year of making us laugh, cry, shout, cheer, clap, scream and pray. One More Year of Life! Thank You God for Connah.
Please say a Pray for all those children who didn't see one more year because of this awful disease.
Posted on: 12/07/2010
Hello Everyone. Connah has been working really hard at school and at his dance routines. On Friday we had his Year 3 School Report. 97.4% attendance, with no pre-warned time off (hospital appointmnets only). This was a really great achievement in its self. His Teacher says that he is trying really hard and is a pleaseure to teach. Well Done Connah. On the dance side he has been hard at it practicing routines with his 3 friends and on Saturday night in Rhyl he was on stage with his drama group and they did a routine from "Mama Mia" and Connah had to sing solo for the first time (braver man than me!). At the end of the show awards were given out by the Head of the Prestatyn Dance Studio's, Gail Astley and Connah's friend India got the Top Award and Connah received a trophy for his dedication and improvement in dance over the last year. Photo's will follow when I get home next week. Other than that school is over in another week and Connah is looking forward to going on a few days hoiday with his friend James.
Auntie Sylvia and Uncle Nils are still working very hard up in Aberdeenshire on putting together the Summer Ball to raise funds for J-A-C-Ks (Joining Against Cancer in Kids) there is a poster on the website and we are taking a coach party up from N. Wales so if anyone would like to join us please contact us or Sylvia via the number on the Summer Ball Poster. If you are up in Aberdeen on the 10th Sept please get your name down as its for a very worthy cause and there are still some seats left.
Please spare a few moments to send some positive thoughts to a little boy called Alfie Gough (www.appeal4alfie.com) as he and his Parents are in need of as much support as we can all give them at this time. Thank you. Love to you All. Debbie, Jim & Connah
Posted on: 07/06/2010
Hello everyone. We had a smashing time away in the camper van during the first part of the school holidays. We went down the Welsh Coast and had some good but breezie days on the beach. Connah is fine and has had his friends Ethan and James round to play. He has been complaining about his shoes rubbing him so we took him to be measured as he had new shoes 8 weeks ago, unbelieveable he is almost in a size 4. I am thinking of strapping planks of wood to his feet so that we can keep up! Also we measured his hieght yesterday and he has grown 3cm's since he was checked in May. This is all good news really as growth means no NB activity!!!!!
Debbie has been training hard for the "Race for Life" with our nieghbour Muareen. The training paid off yesterday as Debbie and Connah along with Kirsty, James & Jake and preceded by Nicola & Nina finished the 5km's in under an hour. We think that Connah could have run almost all of the 5km's but were worried about him getting lost in amongst the hundreds of other runner / walkers. So a good time was had by all walking along the coastline at Rhyl.
However Connah is in bad books at the moment. He was riding his bike with his friends and was told not t go away from the bottom of the driveway. Sometime later he came limping up the drive as he had fell off his bike and grazed his knee's. When asked where his bike was we were told that it was left at the park! So after being cleaned and plastered up he was sent to get the bike and come straight home and when he got back his ears were burning as much as his skinned knee's! Thats all for now. Hope that you all had a good break too. Love to you All. Debbie, Jim & Connahxxxx
Posted on: 28/05/2010
J-A-C-K Foundation Summer Ball
Thainstone House Hotel
10th September 2010 at 7pm
Music by “Tutti Fruiti”
Casino with James Bond theme, by Elite Promotions
Raffle with good prizes
Tables of 10 available for £700
Single seats £70
If you need accommodation, we have negotiated a special price of £65 per room B&B
For more information, or to book your seat / table, please contact Sylvia Koren
Or by phone 01358 720550
Please help us raise money for research
Into Neuroblastoma Childrens Cancer
Posted on: 20/05/2010
Hello everyone. Really sorry that there has not been an update for quite a while. However I had difficulty accessing Connah's admin site whilst I was away at work. During this time lots has happened. The most important being is that Connah is very well and enjoying all his normal activities. As you all know Deb's and Connah went down to London for scans in February (full report at the end), the report finally came through whilst I was away. Also Auntie Sylvia, Uncle Nils, Dario and Scott all did a very good job at the yearly Balmoral 5km walk. The weather started out miserable but improved as the day went on and apart from the usuall aches and pains had a really good time. Well done to Dario who ran the 1.5km's, hopefully next year Connah will be able to run it with you.
Dance class has been going really well and Connah has 4 compititions coming up over the next couple of months, which he and his group have been practicing hard for. The PDT Treatment is still ongoing 5 nights a week, however we do plan to have a few days off during te school break and again in August. In June Debbie and Connah will be doing the 5km walk for "Race for Life" along Rhyl sea front and after that there will be a quick dash in the car over to Wrexham where Connah and I will be doing the 5km walk/run for the "Nicola Fund" so fingers crossed for nice weather.
As I said earlier we had Connah's scan report through a few weeks ago. I have attached it below as we think that it has significant content to the way in which we have treated Connah's disease over the past two and half years, since he finished NHS treatment in March 2007. Recently Connah and Deb's and Auntie Heather went to see Connah's Oncology Consultant for his 6 monthly update and the scan report was discussed. However as Connah is not receiving treatment from the NHS the Consultant cannot discuss whether the PDT Treatment and the healthy diet is having a positive effect on Connah's health or not. Deb's did ask if we could be refered to the PDT Consultant down in London but she was told to "ask the Consultant who did the scans" to refer Connah! I did text a question to Deb's to be asked at the meeting, which was "If mIBG is the bench mark scan for the NHS is Connah now classed as being in remission"? What we were told was to read the report and interpret it as we think fit!
What we do know is that for years we have been saying that healthy organic eatting does affect the childrens condition and improves the immune system and we were being told that was "rubbish" and a complete waste of money! If you read certain other childrens website's they are now being "advised" by thier Oncologists to eat healthy organic food, take suppliments and have exercise, wonder where they got that idea from!!! Please read Connah's report and draw your own conclusion as to the state of his health, which is what Deb's was told to do.
Connah’s Scan Report (extracts).
123 – iodine MIBG scan 16. 02. 10: The calcified adrenal mass and the abdominal lymph nodes do not show MIBG avidity. There is low grade (less than liver) MIBG avidity in the left supraclavicular and pre-tracheal lymph nodes. Conclusion: The Neuroblastoma lesions do not show MIBG avidity.
This contrasts with the previous MIBG scan of June 2007 (last NHS Scan). On that occasion increased uptake was seen in the left supraclavicular region, anterior mediastinum and below the diaphragm the primary site was noted in the right adrenal region and there was evidence of par aortic MIBG avid disease. There was also activity seen in the bone marrow of both clavicles and the distal end of the femur. The intensity of uptake in the soft tissue lesions was high.
FDG PET/CT scan 18. 02. 10: The supraclavicular and paratracheal lymphadenopathy does not show FDG avidity. There is focal FDG activity in the anterior mediastinum corresponding to normal thymus. There is physiological neck supraclavicular axillary and para-spinal brown fat activity. The adrenal mass shows low grade (SUVmax 2.8) FDG avidity. Most of the retroperitoneal lymphadenopathy is not FDG avid; there is only low grade (SUVmax 3.0) activity in the aorto-caval lymph nodes. There is no FDG avid skeletal lesion.
This contrasts with the appearances of the FDG PET/CT scan performed at UCLH in June 2007. This showed increased but patchy FDG activity in the right adrenal bed which crossed the midline and followed the left par aortic region down to the left iliac chain with patchy bone marrow activity.
68-Gallium Octreotate PET/CT scan 17. 02. 10: There is dotatate uptake in the left supraclavicular and right paratracheal lymphadenopathy. The lungs are clear. There is dotatate uptake in the right calcified adrenal mass and in the bilateral retroperitoneal lymphadenopathy. No focal bone uptake.
I have taken the opportunity to look at the images and discuss them with another consultant. It is quite clear that taken as a whole, the imaging shows that the masses of disease which Connah had in 2007 are significantly smaller now. The biological activity of the residual masses seems to be much less.
It is difficult to interpret the changes in Connah’s disease. It is clear that it has regressed appreciably over the last two and a half years. It has probably undergone a differentiation to a less aggressive type. It is really not possible to say whether this improvement is due to the spontaneous natural history of the disease, or to the effect of the complementary treatments he has received over this time. I know that you have been managing his diet very carefully to ensure that he only receives organic foods, free from artificial preservatives, colourings and other additives. I know also that you have been treating him with Photodynamic Therapy. This is not a generally recognised treatment for Neuroblastoma, but may be it has had a beneficial effect.
In conclusion it is safe to say that Connah’s disease activity is much less than it was previously even though he has not had any conventional anti-cancer treatment recently. Unfortunately it is not possible to predict with certainty what will happen in the future. It is possible that his disease will reactivate in time. However I very much hope that he will be one of the small number of patients with stage 4 Neuroblastoma who become long term survivors. It maybe that he will never be completely disease free, but if he can live a normal life with a small volumes of residual imageable abnormality that will be a perfectly satisfactory outcome.
PS Please watch the site for news on the forthcoming Summer Ball in Aberdeen, which is being put together by Sylvia & Nils to raise funds for J. A. C. K (Joining Against Cancer in Kids). Love to you All. Debbie, Jim & Connahxxxxx
Posted on: 01/04/2010
Hello everyone. Thanks to everyone who supported the raffle to raise funds for J-A-C-Ks (Joining Against Cancer in Kids). The winning tickets were as follows: 1st Prize Mrs Hughs (white 601 - 605). Runner up prize winners: Lesley (Ellon pink 491 - 495), Stan (N. Wales yellow 181 - 185), Paul Lonsdale (green 261 - 265), Mrs. C Bullock (blue 46 - 50), Clare Owen-Jones (grey 56 - 60), Ceris Roberts (grey 206 - 210), Courtney (N. Wales green 171 - 175), Chantelle (N. Wales white 416 - 420), Gavin (N. Wales grey 371 -375). Thanks to everyone who helped to sell tickets and to everyone who supported and bought tickets to this very worthy cause. A total of £577 was raised. Love to you All. Debbie, Jim & Connah
Posted on: 26/03/2010
Hello everyone. We received this e-mail today from Dr. Gaze at UCH where Connah went for scans in February.
Dear Jim & Debbie,
This is just to document the telephone discussion we had a week or two ago in relation to Connah's scans done at UCH last month.
The mIBG SCAN now shows no uptake of mIBG in the residual abnormal areas. The FDG(glucose) PET scan showed no uptake in most of the abnormal areas and only the faintest uptake in one lymph node group..
The Gallium Octreotate PET scan showed uptake in all the abnormal areas that is to say the primary tumour region and the lymph nodes.
The CT component of the imaging showed that the masses are significantly smaller than in the June 2007 imaging.
The interpretation of this is that Connah's disease has regressed appreciably over the last two and a half years. It has probably undergone differentiation to a less aggressive type. It is not possible to say whether this improvement is due to the natural history of the disease or to an effect of the complementary treatments he has received over this time.
Best Wishes to you and Connah
Dr. Mark Gaze
Thanks to everyones support and positive thoughts. Love and hugs, Debbie, Jim & Connah
Posted on: 09/03/2010
Hello Everyone. As you know Connah & Debbie travelled down to London a few weeks ago to have a complete range of scans done at UCLH. We have been getting concerned lately that Connah's disease was on the increase as he has been complaining of headaches, eye strain and various aches and pain's, all of which increased our stress level's to right off the richter scale. We decided that we would have a short break away so Debbie and Connah flew out to Dubai to meet me on my way home from work and use up my air miles. She brought with her a suitcase full of all of Connah's suppliments and organic food so he didn't miss out. Needles to say last night after a quick meal and a clean up we were back doing Connah's treatment. Any way we had a smashing time even though the weather was not up to much with lots of grey sky's. We got back last night and this morning Debbie phoned Dr. Gaze who had very kindly offered to do the scans for us. The news is that, there is no new disease what so ever. The primary tumour is of a smaller size than when Dr. Gaze scanned it almost 3 years ago. There is still a small amount of activity in the primary tumour and we should keep doing what we are doing. Dr. Gaze said that he had to do a double take as Connah's muscle and bone growth is great and that he should get out playing more football and bike riding and that when he is complaining of ache's he is having us on. This is great news and has taken a huge weight off us, so thank you very much Dr. Gaze. We will be having a celebration drink tonight of course after treatment! Thank you all for keeping up your support and your positive thoughts for Connah, we know it is working. Love to you all Debbie, Jim & Connah
Posted on: 26/02/2010
Hello everyone. No news yet from London, but we are hoping to hear something shortly. Since coming back from London Connah has been back in school. Learnt a new dance at dance class. Got a very red face infront of his school mates when India (from school & dance class) gave him a Big Hug for getting her a Birthday present. Has been in trouble for not remembering to sing "Happy Birthday" to Nana on Thursday morning until prompted by Grandad's phone call. Got tripped up in the school play ground and has ripped open an old gash on his elbow and cut both knee's and was very upset when he told me about it on the phone last night (there was lots of blood). However he told Nana that "he might be okay for football on Saturday" if he doesn't have to move his arm! A Very Big Thank You to Kerry & Christian Darlington. Kerry sold one of her paintings on E-Bay for 500 pounds and gave the cheque to Debbie for Connah's Appeal. Thank you both very much. Good News from Lucas in Australia who is also using PDT Treatment his latest scans showed increased calcification compared to earlier scans, well done Lucas. Thats it for now, Love to You All. Debbie, Jim & Connah
Posted on: 17/02/2010
Hello everyone. Debbie and Connah travelled down to London on Sunday laden down with a suitcase full of suppliments and organic food that even Hercules would have trouble lifting to University Colleage Hospital for 4 different scans, which will start today (Tue 16th). We usually have to travel abroad for Connah's scans but when we attended the Neuroblastoma Families Meeting last November at New Scotland Yard we met one of the Doctors who had scanned Connah almost 3 years ago and he talked with our Oncologist Dr Brennan and he called us back to say that Connah could have the scans done in London. We know from our meetings with Connah's Oncologist that she doesn't feel it necessary to scan until Connah shows returning symptoms. However Connah has never been completely clear of disease so our arguement is that it can spread again at anytime and recently he has been saying that he has had some twinge's and a couple of headache's plus occaisionally blurred vision (which is why Deb's and I look 105 instead of 50 something, through the constant strain). So Connah had the dreaded needle (canula) in yesterday and although he did try his best to be brave he moved at the last minute so they then had to take it out and stick it in his other hand. However a few minutes later clasping a new "Bakugan" toy he was fine. So fingers crossed for the scans ahead and we shall let you all know how they went as soon as we can. Please keep up the positive thoughts, we know they matter. Love to you All. Debbie, Jim & Connah.
Posted on: 25/01/2010
Hello everyone. The last two weeks has been another whirlwind with racing Connah round to different venue's to do all of his clubs and we have now added football training on Monday nights to the list. Connah had to go to the dentist and have a filling last week. Well if I had taken the video camera I would be £250.00 better off as I could have sent it in to "You've been framed". The dentist wanted to drill a small hole in one of Connah's back teeth so he started with a quick probe about to shouts from Connah of "Hey, Stop, don't do that" Then the Dentist put two big wads of cotton wool in his mouth to keep it open (never usually a problem for Connah) and then began to drill. So Connah has the suction hose, the 2 wads of cotton wool, the drill and the Dentists finger in his mouth and still he continuously talked throughout the whole operation. The Dentist was laughing. Any way nothing got drilled that didn't need to be which I think was a surprise to us all. A couple of days later Connah went for his "Swine Flu" jab. This didn't go as bad as it could have and the Doctor stuck the needle in the arm as soon as she fraction of a second when Connah wasn't moving to avoid her, so not too much blood was spilt.
At weekend we were back at Wrexham FC where Connah was once again the Team Mascot and this time he brought them some luck and they had a 1 - 0 victory, Uncle Clive came with us and we all had a terrific day out. Photo's will be on the web soon. Everyone is well although Connah has been in some small pain now and again. We are wondering if as he is growing (which he is doing rapidly) the tumour is being a bit stretched and that is causing the minor pain! On the whole everything is fine. Even the rain is easying off! Thats it for now. Love to You All. Debbie, Jim & Connah xxxxxxx PS Thanks to everyone who helped sell and supported us with the Raindeer food over the Christmas period you all did a great job.
Posted on: 21/01/2010
Hello Everyone. We heard today the very sad news that Hannah Edwards had passed away. Hannah had been fighting Neuroblastoma for a very long time since Aug 2003. During that time she had done a lot with her life including being awarded The Star of Merit. The Star of Merit is awarded for any member of Girlguiding UK who has displayed "great courage or fortitude" and she and her Family did in every way. Our Prayers are with her and her Family. Love Debbie, Jim & Connah
Posted on: 17/01/2010
Hello everyone. Sorry it has been such a long time since we updated Connah’s Diary but with Christmas, New Year, bad weather and restarting school things have just been a blur. So let’s go back to Christmas and say that we all had a Wonderful time. Connah’s Auntie Sylvia and Uncle Nils came down on Christmas Eve, which is when I also got home. Connah was very excited and got up 3 times during the night to ask “Has he been yet”? To which the resounding answer was “No and if you get up again he won’t be coming at all!”. Connah finally managed to stay in bed to 06.15am, which gave Deb’s just enough time to wrap some last minute presents and then we were woken to yells of “He’s Been, He’s Been, come and look”. So it was tea and coffee to bring us round and lots of bags to put all of the wrapping paper in and 2 hours later we had finally got everything unwrapped. Loads of smashing presents and one very happy little boy sat in the middle of them saying “Grandad can you set up my Wii and balance board now”?
We had a lovely Christmas Day with our friends Paulina, Clive and Lukasz joining us for Christmas Dinner and then we had an ongoing air hockey marathon in session for most of the afternoon with Lukasz helping Connah to make up some Lego and lots of food and drink. Boxing Day we went down the beach for a walk with Monty and Connah had some fun on the play area next to the Nova before we all returned home a little bit frozen and windswept.
At weekend we drove over to Glossop and had lunch with Great Grandma Broom. There was lots of snow around and Connah’s Cousins Hattie and Tom came over and they had lots of fun and playing and then outside for a quick snowballing.
Lewis, James & James all came round to visit and have some fun with Connah and there was lots of leaping about on the Wii and on the air hockey. Connah got lots of good books for Christmas, which we are busy reading when he is under the lights having his treatment.
New Year was a lot quieter and Connah was spending lots of time in front of the tv in his playroom waving about the Wii controls and balancing on the board doing all sorts of sports and games including “Just Dance” which Connah loves and Grandad made a complete fool of himself at and I’m just grateful that we didn’t open it on Christmas Day when everyone would have seen. I was much better at Kendo Stick fighting until Connah stepped in to close and took a whack to the shoulder!
Then it was back to school but not for too long as the bad weather came and we had to collect Connah from school early and next day we were blanketed in white so we got out and built a snowman in the garden, which doesn’t happen too often in Gronant. We made a bad decision to take Monty for a walk as the paths were so slippy we did not enjoy it at all and Connah managed to end up on his backside 4 times in a short space of time. When we got back home it was time for the snowball fight, which we all enjoyed even Monty. School was back open next day so it was back to the grind for Connah and a few hours respite for Nana and Grandad!
Now it’s back to the routine of school, dance class, football club, chess club, drama club, treatment and whatever else we can fit in. Connah is in good health, although has been complaining now and again about some pain in the area of his one remaining tumour as he is still growing, eating like a horse and has enough energy to power up a power station we are going to continue on with his treatment and wait to have a scan in Feb / March. We remain resolute that we are taking the right course of action and that the treatment is keeping Connah in good health as we have still not achieved a state of remission yet. Please keep Connah in your thoughts and say a Prayer for those children who are not well at this time, Hannah, Sam and Sophie, James & Ashley. We Love You All. Debbie, Jim & Connah xxxxx
PS Thanks to everyone who sold reindeer food bags. Once we have collected all of the money we will announce what was collected.
Posted on: 01/01/2010
Happy New Year Everyone. Well thats 2009 over with and our thoughts are for a New Year and what it will bring. Our Wish for the Year is that Connah will be free of this horrible cancer and be able to have the normal life that all children deserve. To all of the Families out there who are also fighting, keep fighting, never give up and just have Faith. Remember even when "The Fat Lady has sung, taken off here make up, put here rollers in and is sat infront of the fire having here coco" its still not over! Love to you all and Good Luck for 2010. Debbie, Jim & Connahxxxx
Posted on: 10/12/2009
Sorry for the delay in updating the diary but I’m away from home at the moment and a lot of stuff has been happening. Any way Connah is doing fine. Apart from the usual football practice / chess club / dance class / drama class and all the school stuff and machines he (and Debbie) have had a busy couple of weeks. First off we have had a group of students from Gloucester University making a documentary of “a day in the life of Connah” this has been going on for some weeks and has now come to an end (I think the guys got tired of getting beat at “air hockey” every time they came up), we look forward to seeing the end result in the New Year. During this time Connah was practicing his “High School Musical” dance routine for dancing at the Prestatyn Bernardo’s benefit which was organized by Rachel (Prestatyn Dance Studio’s) to raise funds for Bernardo’s and it all went off very well, so well done Rachel and everyone who helped. Shortly after that Debbie had a phone call from Radio City FM to say that Connah had been nominated for their “Local Hero’s Child of Courage Award” so that was very exciting and Debbie and Nicola got out their “posh frocks” and all three went over to Liverpool last Tuesday and rubbed shoulders with a few Celebrity’s. Connah was picked to receive the Award and when he went on stage Debbie said that it was the first time he was lost for words and all he could think of to say was “This is Brill”! They all had a smashing time, thank you Radio City FM. Next day Connah went into school and was telling everyone about it and as they did not believe him he had to take his award and certificate in next day to show them (that was his story anyway).
When talking about the painting and the Charities the First Minister made reference to Connah and said that “the reason he had become familiar with the illness of Neuroblastoma was due to the stories he had heard (Auntie Sylvia) on Connah Broom and his daily activities and treatment and that he is a very brave little boy”! Well what can you say after that, Local Hero Award, First Minister of Scotland talking about him, Documentary made on his daily life! Next stop front cover of “Time Magazine”!
The week has also had lots of other events with the School Carol Service the other night, Connah & Debbie writing out almost 100 Christmas cards for all of the children of “Year 3 Class of Bodnant Juniors”. Connah went for allergy tests due to a re-action he had a few weeks ago and we have found out that he is now allergic to (in descending order) Horses, Cats, Grass and bed dust! Connah’s very good friend Thomas tragically died last week and the funeral was held on Wednesday, it was very emotional for everyone who attended. The school have organized that there will be one hundred white balloons released all with messages tied to them from Thomas’s school friends, Connah asked me last night on the phone to “look up in the sky for them on there way to Heaven with all their messages for Thomas”. To finish I would just like to say that “behind the Fabulas little boy who does all these things is, one very resolute Nana whose sole priority is that he will survive this illness and have a normal fun filled life whilst doing it, Close Friends and Relations who give their time and support to help us achieve this goal, lots and lots of “well wishers” from all around the World and all of you who say a small prayer every night for Connah's continueing good health and God without whom miracles don’t happen! Oh and me, occasionally! Thank You each and everyone. Love Debbie, Jim & Connah.
Posted on: 06/12/2009
Hello everyone. Last Sunday we had the very sad news that Thomas one of Connah's school friends had died suddenly. It was a huge shock to everyone especially to all of his friends at school. Thomas his Brother Dillon and Connah had all been on holiday together to Portmadoc earlier this year where they all had great fun. They were very good friends and looked after each other at school. Connah went for his very first "sleepover" at Thomas's home and didn't stop talking about it for a week. We will always remember Thomas. Please say a Prayer with us for Thomas and for his Family to get through this terrible time. Thank You. Debbie, Jim & Connah.
Posted on: 27/11/2009
Hello everyone. I have been really busy this last week with lots to do at home and school and guess what I have been on camera again! Some men from the University contacted Grandad and asked if they could make a short documentary about me and my treatment. So they have been down and filmed me having all of my treatment and then they talked to Nana & Grandad and also our friend Dr. Jessup. Then on Saturday they came back and watched me at football training and Grandad say me score a goal for the first time. Also they are coming back on Thursday night to film me dancing in Prestatyn at a fund raiser for Bernardo’s Charity. When it is all done we hope to be able to put a link into the website so that everyone can see it. When they were not filming I had them playing air hockey and they even sat and watched Prince Caspian on tv with me. Thanks Paul and all of the guys.
Everything is a bit of a rush this week as Grandad has gone back to work and Nana is having to chase me round on her own, but Auntie Maureen is coming to help her for my treatment at nights. But I am trying my best to be good! Auntie Sylvia, Uncle Nils and Jan were busy at weekend. They went to
PS Please visit www.teamsam.com and leave a message for him as he needs some positive thoughts at the moment as he having a tough time. Remember to tell him you are a friend of Connah’s.
Posted on: 17/11/2009
On Saturday morning we were up bright and early to attend the “Sparks Neuroblastoma Family Day Conference”, which we had been invited to by Yvonne Brown and was sponsored by Sparks (the Children’s Medical Research Charity) and The 2 Simple Trust. The conference was held in New Scotland Yard thanks to Yvonne and Richard so we had stayed just over the road at the “Jolly St Ermin Hotel”. A number of prominent Doctors in the field of NB including one Doctor from America were to talk on subjects ranging from a new banding system for different stages of NB to Clinical Trials and new treatments coming to Europe. Also in the afternoon there were discussions on how we Families can support fund raising for new initiatives into research for Neuroblastoma.
Whilst all of the grownups were meeting inside New Scotland Yard (I was a bit disappointed at not bumping into Jack Frost or hearing any shout “Let’s fire up the Quattro!) All of the children were about to have a really smashing time. It started off over in the Hotel. Linza Corp( 2 Simple Trust) had arranged a room for the children to be entertained in and her Husband Steve and friend Nikita were doing a great job keeping all the kids amused. However there was more some Police colleagues of Yvonne & Richard had organised a trip out in a couple of Police vans to places of interest around the City, the highlight of which was going for their photo taken outside N10 Downing St. Whilst the photo was being taken the door opened and out came Mrs Darling (The Chancellors Wife) who turned out to be a real Darling and invited the children inside for a guided tour. (This may prove to be an amazing opportunity to raise awareness of NB as since the visit Mrs Darling has been in contact with the Police to find out more about the children and their illness). They were then taken back to the hotel to play with some toys and games donated by TESCO and the very kind Police Officers chipped in when they heard that it was Connah’s Birthday and bought him a really great BIG, Bright Yellow, gives out Loud Noises, Transformer (thanks very much). Connah & some of Linza, Steve and Nikita’s children and Yvonne’s Rhian ended the day racing around the hotel lobby with transformer cars frightening the life out of lots of guests who were probably not used to highly charged children in the quiet sanctuary of the old Monastery grounds of the Jolly St Ermin! Thanks to everyone who looked after and entertained the children whilst we were at the conference (including Mrs Darling).
Back to the conference: The meeting was very well attended by both Families and Doctors. It gave us the opportunity to meet other NB Families and renew acquaintances with Families that we were in contact previously. The information that the Doctors gave us very interesting, especially about new areas of research and different approaches to treating NB. Thanks to all of you that gave up your Saturday to take part. It was also good to be able to meet and talk informally with the Doctors, particularly Dr. Mark Gaze and Dr. Giselle Sholler (from Vermont). As you can imagine when discussing medical issues with Doctors concerning the survival of our seriously ill children the conversation at times got a “little heated”, however there was only a small amount of “verbal” blood on the floor at the end of the meeting. Although none of the treatments that were discussed that are coming along in the future will be able to be used on Connah we thought that the meeting was a great success and should be convened at regular, say 6 monthly intervals. Dr Renny Leach from 2Simple Trust did an excellent job facilitating the meeting and keeping the momentum going. The meeting was wrapped up by talks from John Shanley (Sparks), Richard Brown and PC Taff Edwards (Taff from Swansea has organised a team of volunteer Police Officers who gave up there time to raise funds by cycling through parts of America and run in the New York Marathon and to raise awareness of NB through JACKS Foundation. They raised over a £100,000 to date. So come on you North Wales Bobbies let’s see you on your bikes!).
So on the whole a thoroughly useful conference and thanks to all who organised, attended and sponsored it.
But there’s more! At the end of a really long day we said our goodbyes to everyone and went back to the hotel for dinner. We had arranged that after dinner the waiter would bring in a surprise for Connah. So after dinner had finished all of the lights went down in the dining room and in came the Birthday Cake (which we had brought with us) with a big candle lit 8 in the middle of it. Connah was really surprised and we sang Happy Birthday (in English and Welsh). We retired to bed a weary bunch with the thoughts of having a bit of a lay in on Sunday morning. This was firmly squashed by the hotel fire alarm going off at just before 8am and a full evacuation took place. People came out in various states of dress to the amusement of all the Chinese tourists who had remembered to grab their cameras along with their coats! When it was confirmed that there was no fire we went back in for an earlier than intended breakfast. Later we went for a walk around central London and we managed to see the Changing of the Guard at Buckingham Palace (No invite to have a quick look round this time), Connah had his photo taken with a group of Scottish Pipers & Drummers and we had a “terror firma” look at the London Eye (Grandad doesn’t like heights, flying or rollercoaster for a number very interesting reasons). It was then back to the train and off home. Thanks also to Virgin Rail & Clic Sergeant for supplying the rail tickets.
PS Please give Sam Hutchison all your extra special positive thoughts tomorrow and the next day as he has been quite ill recently and is going for scans. However his football team (The Chargers!) won the other night so he will have a smiley face when he gets to Philly!
Posted on: 16/11/2009
Hello everyone. Well the Big Day finally came last Friday when I became 8! I woke up nice and early without anyone having to call me 5 or 6 times. There were lots and lots of presents and cards waiting for me to unwrap, thank you all very much for sending them to me. I had to stop playing eventually and get ready for school, but I only had to go for half a day as we all went down to London on the train. It was all a dash as I went to school and Monty had to go to the kennals and Nana had to rush round getting everything packed, but we just made it to the station before the train arrived. While we were on the train Auntie Sylvia and Uncle Nils were flying down from Edingburgh to meet us in London as not only was it my Birthday but we were going to a conference for families on Neuroblastoma, the first time one had been organised.
Anyway we had a good trip down on the train. Grandad and me played Bakugan and made up scary faces in the sticker book that I had for my Birthday. Even though I had had my lunch at school I still had room for 2 sandwhiches and 2 organic rice cakes that Nana had made and a bag of organic crisps on the journey. When we got to London we had a taxi ride to the hotel and then after a quick baths and showers we went down for dinner. Nana said that there was going to be a Big Surprise after dinner and she asked me what was my favourit musical show, so I told her "Mama Mia" she said guess what we are going to see tonight? Mama Mia. So we took another taxi and met Auntie Sylvia and Uncle Nils at the theatre and we all saw a Smashing show that we were all singing along to. Near the end though I was very tired and had a little sleep, it was a very long day. As soon as we were back at the hotel I was in bed and fast asleep as it was going to be another long day tomorrow.
Posted on: 05/11/2009
We returned from our half yearly trip to get Connah scanned last week. Unfortunately the news was not what we were expecting. Connah had a little bit of a cough before we went over to Poland so we used his "Air Buddy air filter" on the plane. The weather in Warsaw was a sign of things to come, thick damp fog that stayed around for the whole visit. We went to the Clinic on Monday morning for the scan and Connah had been his normal self. Dr. Dzuik examined Connah and said that he looked fine except for some redness of the tonsils. Connah was very brave for the needle and they took a prick of blood from his finger to check his sugar level (which was normal). He then went for the PET Scan and lay very still whilst Deb’s entertained him with an adventure story about dinosaurs and his friends. He then had to have the “dark contrast” liquid injection prior to the CT Scan. During the scan he would not lay still and started to jump about saying that the liquid was burning his throat and chest, so the scan which takes about 60 seconds was not going to be very accurate. We went back to the hotel and next morning just as we were getting ready for our journey home Dr. Dzuik phoned to say that there had been an increase in activity in Connah’s primary tumour site. I dashed over to the clinic to get the PET Scan results and have a quick chat with the Doctor. There has been an increase in activity from 1.4% to 1.8% in the primary tumour as this just falls outside of the parameters for error the clinic has to report it as an increase. This was as you can imagine a blow to us as all the indications were that we are heading in the right direction. Dr. Dzuik has suggested that we should return and have another CT Scan in 3 months time to clarify the situation.
We flew home and as Connah’s cough was not getting any better Deb’s took Connah to see our GP. He was diagnosed with severe tonsillitis and his tonsils were red raw and put straight onto antibiotics. We were really surprised at this as Connah had not complained of feeling unwell, had not lost his appetite and had even been eating toast and crusty bread and running around as normal. This is what had caused Connah to have the reaction to the “dark contrast”. So the go forward plan is to intensify Connah’s nightly treatment, have a VMA (check of Connah’s urine for any increase in cancer cell activity) test done, see Connah’s Oncologist for his 6 monthly check up next week and have a CT Scan done in 3 months time to clarify the situation, We will also ask Auntie Jean if she will increase Connah’s Rieki from 2 seasons to 3. We are committed to the treatment that we are doing and are positive that it is having the desired effect and giving Connah the quality of life that any 7 year old going on 8 (next week) should have. Thank you all for your support. Debbie, Jim & Connah
Posted on: 22/10/2009
Hello everybody. Guess who was trouble this week? Me! Grandad came to pick me up from after schools rugby club and when he got there he could not see me on the playing field, so he asked the teacher where I was and the teacher said "I haven't seen him today, perhaps he is in the main hall". So Grandad went into the school and guess what, I wsn't there either. Just as he was asking some of the other boy's if they had seen me the Lady who runs the "after schools clubs came up and said that "I was with another club as no one had come to collect me when school finished". Grandad was cross as first he was upset at not seeing me and then finding out that I had forgotten to go to rugby club and told them that no one was there to pick me up. So no pudding for me this week! Some good news my "Play Room" (Conservatory) is now all done and yesterday the air hockey table arrived, so thank you very, very much to everyone who gave money for my 7th Birthday as Nana saved it and it bought me the hockey table. Me and Grandad played on it last night and I won a game and he won some too but lets not talk about that! All my toys are going in and my football table and my organ and now there is lots and lots of room in the house and Nana says that "there is now room to swing a cat around" (whatever that means)! Last day of school today so Nana thinks she will get a lay in bed in the morning, not me I will be up and in the play room! Love You All and thanks again for the air hockey. Connahxxx
Posted on: 16/10/2009
Hello everyboby. What a week we had. I had even more homework, Grandad was recovering from being "poked in the eye with a sharpe stick" (well branch really). Nana has been busy planting bulbs in the garden and collecting for the school fair. Auntie Sylvia, Uncle Nils, the Ladies from "Toymasters" in Ellon and Scott (The Trinity Mall Monster) completed the 5km Aberdeen walk for The Nueroblastoma Charity, I was playing footballon Saturday and then Grandad took me and James to see "UP" at the cinema and it was really good and I can't wait to see "Fantastic Mr Fox" soon as I am busy reading the book and its very exciting. I now have 28 house points for doing good work at school. But I missed half a day on Monday as I was not well on Sunday, all my face got very big and my lips stuck out and my eye's were running so I had to go to Glan Clwyd Hospital. The Doctor said I had a reaction to something and she gave me some medicine, but I had to go back on Monday for a check up. Nana said I looked like Mick Jagger! But it didn't stop me from going to Rugby practice on Monday at school and on Wednesday I have now started Chess Club. Dance Class is going very well and I am dancing in a trio with two girls, India amd Rhian. I have been asked to dance at a benifit for Barnardo's Charity in November so that will be fun. Grandad saw a news article on Sky News website about PDT, which is the treatment I get at home. So Grandad followed the link to a Charity called "Killing Cancer", which is all about using PDT to treat Cancer and is supported by lots of Celebrities and the NHS. Monty is okay but he may have to have an operation after we come back from Poland, Auntie Paulina says it is snowing there so we had best take our winter coats when we go! Thats it for now. Have a good weekend. Love You All. Connahxxx
Posted on: 09/10/2009
Hello everybody. School has been very busy and lots of homework, spelling and sums to do. Last weekend after football training Grandad took me and James to see "Cloudy with Meatballs" it was really good with whatever food you wanted falling from the sky! We have had a change round with clubs and instead of doing dancing on Mondays I have now started Rugby Practice as an after school club and next week I am going to the Chess Club on Wednesday. Auntie Sylvia and her Team did very well to complete the 5km walk at Edingburgh as she has a bad foot and it was, cold, windy and lots and lots of up hill. She is walking again this weekend in Aberdeen with Jan, and a group from The First Minister of Scotlands Office and Scott (The Trinity Mall Monster) so please get out and cheer them on. Thanks to Linda & Steve for allow in the Mall Monster to help us. So Good Luck everyone. Oh Monty has not been very well and he had to have an x-ray so they put some dye into him just like they do when I go for my scans. Thats it for now. Love You All. Connah xxxxx
PS Please send some Positive Thoughts to Hannah as she is not very well and has started chemo again. Thank you.
Posted on: 28/09/2009
Hello everyone. Sorry its been a while for us to update you but guess what I have been getting home work from school and with treatment and dance/drama/dance and football the week goes by really fast! I have had 12 house points up to now for homework and good work in school and I am really enjoying being at BIG School. Last week we had the "Potatoe Bus" come to visit school, its a big double decker bus and when you go on they tell you all about potatoe's and they gave us some seeds to grow and everyone got some "oven chips" to eat, but I said "No Thank You" as they were not Organic. On the way out of the bus you had to go down a big slide and my Teacher Mrs Packer went down it and she screamed all the way down (she is a girl!). Auntie Sylvia went and met The First Minister of Scotland to talk about Neuroblastoma (I will let her tell you at the end). Saturday my friend Thomas came for tea and we had lots of fun playing "Power Rangers" and we both got icecream after tea as we ate eveything on our plates. Nana & Grandad have been very busy in the garden so we spent some time on the trampoleen.On Sunday morning guess what we saw in the garden? A Wood Pecker, it was the first time that we had seen one in our garden, sometimes we have hedgehogs and lots of squirrels and birds but this was the first Wood Pecker. On Sunday I went to James's Birthday Party and we had a smashing time, his Mum had an Organic cake made so that I could have some. Then James and his brother came back to my house and we played on the play area and ran round the garden and no one fell over, Nana said "that makes a change, but I do have a big scab on my knee and a bruise on my elbow from when I bashed into a tree at school playing football! Thats it for now. Love You All, Connahxxxx
Message from Connah's Auntie Sylvia who went to visit the First Minister of Scotland Alex Salmond last Friday to discuss support for Research into treatment of Neuroblastoma Childrens Cancer:
Posted on: 14/09/2009
Hello everyone. We have been really busy with going back to school and I had my first homework last week, this is going to be a bit harder, but I really am liking it and my Teacher Mrs Packer is very nice. And its back to clubs as well, last week I had dance class on Monday and Wednesday, drama on Thursday and football on Saturday and of course machines every night. Last weekend we all went up to see Great Grandma in Glossop and she is well and we all had dinner together, Thanks Great Grandma xx Grandad took me and my friend James to the pictures and we saw "G Force" about hamster special agents it was good fun but I think Grandad fell asleep near the end! Also we have been very busy in the garden and James and me were helping Nana and Grandad move some bricks yesterday and then we went off to play in the woods and we found a swing so we were running and jumping and swinging from the big tree branch and guess who fell off? But I was okay and by the time Grandad had got there I had almost stopped crying and then we went back on it again! Thanks to Sam from Ella's Kitchen who make really good organic sauces that I like on my dinner, she sent us some in the post to keep me going whilst they are off the shelf in the shops while they make changes to the packaging. They also make Great Organic Baby Food. Thanks to Debbie from Aerospace in Broughton who raised £155.00 doing an "Aerobathon" and thanks also for the smashing gifts Nana has put the plane pictues up around the room. Auntie Sylvia is still in training up in Scotland for her walks even though she is having problems with here foot, Grandad says remember "No pain, No Gain" (Honest Auntie Sylvia it was Grandad who said it)! Thats it for now. Love You All Connah xxxxx
PS Please give your special thoughts today to Pierce Philips over in Tulsa and his Family.
Posted on: 30/08/2009
Hello everyone. I have had a good time going to football training at Prestatyn football club over the holidays and I have been doing lots of hard work in the garden with Nana, helping her to move some big rocks. While I was out playing with Katrina in the garden we found a dead shrew and I put it in my pocket and forgot about it, when I got back to the house I remembered it and pulled it out to show Nana and Auntie Linda, they got a BIG surprise and they made me get rid of it and then I had to take all my clothes off for the washing machine and then go and have a bath and really scrub my hands, it was only a little mouse! Today my friend James came to visit and we played "BAKUGAN Brawlers, Pokemon, trampoleening and watched "The Grinch" on tv. Thanks for coming James. We were going to go to have a play on the bouncy castle, but it started raining really hard so we will go another time. Thats it for now. Love you all. Connah xxxxxxxxxx
Posted on: 13/08/2009
Hello everyone. I have been helping Nana in the garden when the weather has been good and the other day Elle came round and we had good fun running around and playing and everywhere we went we took Monty with us and after we had played all day we walked Elle home with Monty. When we got back Monty went straight to his bed and didn't move for the rest of the day. Nana said his legs had been worn down to stumps with all of the running that he had done. Yesterday was my 6 monthly check up at the local hospital. Doctor Hesseling said that I looked really good and my wieght and hieght were going up and still on the normal track. We go to see the Oncology Doctor in Octobre for her check up (but we all know that I am BETTER). Nana asked the Doctor some questions about how long they can keep my Stem Cells for and what they do with them after, he said that he would check. She said that we would be going to London for a meeting with other NB Families and some Doctors before Christmas to talk about treatments and how they can make more children like me better . Then it was off to Audiology as I was getting new hearing aids, it took a while as they did not fit my ears at first so they had to file them down (not my ears) and then I took the hearing test and as I was being very very good they asked me if I would concentrate and take the grown ups test as they could make better adjustments if I did it properly, so I did and they said that I did really well. So I now have new hearing aids with a Dinosaur in one ear and Man City in the other. thanks for all of the messages everyone. Please think positive thoughts for Sam in America (teamsam.com) as he is going to start a new treatment today and well done to Zac who had some good results from his scan's this week. Love You All. Connahxxxx
Posted on: 10/08/2009
Hello everyone. Grandad has started calling me "Big Foot" as Nana has had to take me and buy me new shoes, new trainers and new football boots again, thats the second time this year and I am now in size two and a half shoes and size three football boots (thicker socks). Grandad says that he is going to tie planks of wood to my feet as it would be cheaper, I think he is joking! I went to Football training for 3 whole days last week at Prestatyn Football Club it was really good and kept me out of Nana's hair for a while and then I was helping her break up some rocks to put in the garden. This week I am going to the hospital to have my new hearing aids fitted and have my check up with the Doctor, they will probably measure me to see if I have grown taller and then Grandad will be saying "oh no another school uniform" Ha Ha Ha. Its Auntie Ellen's Birthday today, hope that you got the cards Auntie Ellen? The other day it was James Leahy's 8th Birthday over in Dublin, we hope to go over and visit him sometime, he is on an organic diet just like me. Hope you got some good presents James. Thats it for now. Have a good Summer Holiday everyone. Love you All. Connahxxxx
PS We received the very sad news last night that Chelsea Knighton had passed away. Chelsea and her cousin Zac have both been up to visit Connah and support him in the semi-final of the talent compition. Our thoughts and Prayers are with Chelsea and her Family and with Zac who also has NB. Please send your thoughts to them today. Thank you. Debbie, Jim & Connah
Posted on: 03/08/2009
Three long years ago today (3rd August 2006) Connah was diagnosed with Stage IV Neuroblastoma Cancer. The prognosis was very poor. For 24 hours we immersed in the “shock/horror” of the situation that no Family would ever want to find themselves in. Then we dug our heels in, gritted our teeth and made a commitment “whatever it takes to make Connah better we would do”, with God’s help. It’s been a long three years with many struggles and heart rendering and joyous moments along the way. Connah, throughout all of it has been a “STAR” he has endured all of the early in hospital treatment with a cheeky grin and a compassion that always surprised us especially when one day he sat between us and said “When I was a star in the sky looking down I picked you to look after me” and then he gave us a Big hug! If you ask him about the time he was rushed to hospital with a bleed that wouldn’t stop, he will say “what good fun it was ridding in an ambulance with the siren going and the light flashing”, that was the nearest we came to loosing him. For the past 18 months we have been giving Connah treatment at home after the NHS Treatment had run its course. To see him today with boundless energy, doing well at school and enjoying life to the full with all of the activities he is involved in is to say the least a Miracle!
The Miracle comes at a price and that price is the nightly treatment at home that Connah has had for the past 20 months, except for the odd week here and there when we have had to go away for scans or allowed ourselves a short break in the
To all the people that have helped and supported us over the last 3 years a very BIG “Thank You”, we needed each and everyone one of you and we still do. The journey may not be over for sometime. Our goal is of course to see Connah completely cancer free, at this moment the situation is that during the last 20 months 10 of the 11 tumors have died, the main tumor is hanging on stubbornly but the activity inside has decreased to a very small amount. In a follow up detailed study of the last scans from
Posted on: 02/08/2009
Hello everyone. What a smashing night we had on Friday. I had been doing some extra practice with
Posted on: 31/07/2009
Hello everyone. It’s been a while since we came back from camping in our campervan at Porthmadoc but we had a smashing time although the weather was miserable most days. It was a bit of a squeeze at first as we had not been to stay out in the van before but we all got a place to sleep in the end even Monty who was very good for the whole time. We went to see the show at night time and I played hide & seek with some of the kids from other campers and caravans and we went for a walk on the beach with Laura from
On Saturday morning it was football training and Nana & Grandad had got me a new Man City Goalie shirt and they had my name put on the back and at practice I saved 4 shots on goal (I did let 3 in though). Then in the afternoon Auntie Linda, Uncle Tony and Holly came to visit from
PS We heard the very sad news that Adam Sandells had passed away on the 23rd July. Adam had been fighting NB for the passed 2 years. Please put Adam and his Family in your thoughts and your Prayers.
Posted on: 19/07/2009
Hello everyone. It was a really busy end of week, I had a smashing time, school was really good as we did lots of playing. On Wednesday we had our leaving service practice at Calvary Church and in the evening I had my last practice at Drama Class for our " End of Year Show", we practiced "Chitty Chitty Bang Bang, Song & Dance" & " The McCafferty" song from "Cats". Then it was off to Bodnant Junior School for the disco, where I wore my flashing specs and had a good time with the girls from my drama class. On Thursday it was the school leaving service. I was sat up at the back with Morgan, Dillon & Teeglin. Nana & Grandad came to watch and all of the class's sang the song we had been practicing and then Reception & Year One sang the " Goodbye song" to those of us that were leaving we sang the chorus "Goodbye to Bodnant Infants" Nana said everyone was crying in the audience. Nana had arranged with Mrs Vernon for me to leave behind a special cup for the person who had been the "Kindest" to others throughout the school year (The Connah Broom Kindness Cup) and I went up on stage to present it to the first winner who is Charlotte Furber from my class, well done Charlotte. On Thursday night in was my leaving disco and I went in my "High School Musical" basket ball strip, we had lots of games and even did the limbo under a pole. I had my picture taken with Rebeka from my class who I have know since we were at "Daisy Chains Nursary" (she has a really nice smile, don't tell her I said that). Friday was the BIG Leaving day and in the morning Nana & I went round all the Teachers & Staff and gave them a card and a leaving present. Mr Kay got an exciting book on Explorer's. We had a a little class party and then it was time to finish and we all got a BIG hug from Miss McMurry as we were leaving, we will miss them, but we are looking forward to going to our new school in September (Bodnant School is split between Infants & Juniors). Then it was off home to have tea with Auntie Linda & Chantelle before going to off to Rhyl Town Hall for our end of year Dance & Drama Concert. Every seat was taken to see dance's and song's that we had been practicing throughout the year. We dressed as cats for "McCaffery's Song" and I had ears and a tail and as I was walking off satge after the song I was waggling my bum and tail and everyone was laughing. It was a good night and everyone enjoyed, but we didn't get home till late. Nana & Grandad had decided not to do treatment as we were home so late, yipeee! On Saturday I went to football training at Prestatyn Football Ground and Grandad has signed me up to go football training during the school holidays. On Saturday afternoon we went to Rhyl so that Grandad could collect his new glass's and guess what, I saw Jack from my old school at Gronant, he was wearing the new Manchester City strip, perhaps I will get one if I am good! Thats it for now, Nana & Grandad need a holiday to recuperate after this week so we hope to go away in the camper van during the holidays. Everyone have a good time see you all in the new school in September and thanks to All of the Teachers & Staff at Bodnant School who have helped me do so much and improve over this last year. Love You All. Connahxxxx PS When Connah came out of class on Friday after his final fairwell's he stuck out his chest and said "I'm a Junior now Grandad" which to qoute a famous saying maybe "only one small step for a little boy moving up a class at school, but is on HUGE Leap for a little boy who was sent home with not much chance of seeing his 6th Birthday. Well done Connah and thanks to all of you who helped us come so far.
Posted on: 16/07/2009
Hello everyone. What a good start to the week we had. We went for a walk along the beach at Prestatyn and the weather was nice and sunny, but not just Nana, Grandad and Me, but the whole of Bodnant Infant School, with all of the Teachers, Staff and some of the Parents too. We were raising money for the Neuroblastoma Society Charity on a sponsored walk and thanks to everyone's kind donations we raised £406.40. So well done everyone. Its a very busy week this week as its the last week of school and we have lots to prepare for. On Monday night it was Gayle's Dance Class and on, Tuesday night it was Tara's dance practice. Wednesday morning we were rehersing at Calvery Church for our leaving service and in the evening it was Drama Class followed by the Junior School Disco and I wore my flashing spec's and had a smashing time. Thursday it is the leaving service at Calvary Church and then in the evening it is the Infants School leaving Disco. Nana and Grandad are very tired as we still do machine's every evening, so it has been late nights this week. Thanks to everyone who wrote in after watching me on The Trisha Show on Monday. Love You All. Connahxxx
Posted on: 10/07/2009
Hello everyone, what another busy week I have had. I went to see "Ice Age # 3 with James and Grandad and it was lots of fun. On Monday it was dancing at Gayle's with my friends and this week I was good as Nana was watching! Then on Wednesday Nana took me to the BIG School "Bodnant Juniors where I start next term. All our year spent the morning there seeing our new classrooms and meeting the teachers (our new teacher was ill so we didn;t get to meet her, so get well soon Mrs Parker). We had dinner in the school canteen and Nana had taken my organic dinner in and guess what it was almost the same as everyone else's (mince & vegatable's). So it was a really good time. I can't wait to start there in September. Not so good day on Thursday as I had to go to the Dentist's for a filling. The Dentist wa very good and when I said that I would not have a needle he did the drilling as gentle as he could, but I had a problem holding my mouth open wide enough (Grandad said its not usually a problem!). As I was good all day and was very good on my machine's (didn't get too cranky in the bath and no spashing Nana) I got my "Bolt" dvd, which Grandad had brought home with him from work and was he saving it until I had been very good. Yipee its Friday today and weekend tomorrow, Love You All. Connahxxx
Posted on: 05/07/2009
Guess what everyone we went to Conway to day to see a big battle with army vehicles. But before that Auntie Jean came and gave me my Rieki to get me going for the day. There was lots of bangs and a big explosion and tanks driving really fast shooting guns and at the end there was a Huge explosion with all fire. We had a ride on a big American truck and Grandad told me all about the vehicles that he used to be in when he was in the Army. Then we went and played on the park and I had a game of cricket with some boys from Warrington so we had a smashing time. Nana & Grandad took me out for a treat as on Friday I got my school report for being back in full time school and it was really good, thanks to All My Teachers at Bodnant Infants School. Bed early tonight as its school in the morning. Love You All Connahxxxx
Posted on: 04/07/2009
Hello everyone. You'll never believe this, last night we went to the school Presentation and BBQ Night. Well I went off playing football with Mrs Leech and all of the boys and Nana & Grandad were off chatting (gas bagging) and James's Dad came over and told them that I had won some awards, but as we were over the side of the school yard we had not heard the announcements up on the stage. Mrs Potter came over and saw Nana and then came back with my awards and Grandad dragged me away from the football long enough for her to present them to me. I got a "Community Award" for al of the things that we are involved in outside of school, a "Music & Choir Award" for singing in the school Choir and an "Endeavour Award" for all my hard work at trying to improve during the school year. Then it was back to football and I scored a goal!
We then dashed over to tne Nova Centre where it was the Drama and Dance Arts Festival and Nana quickly changed me into my "High School Musical" basketball strip so that I could do my solo dance (that Nana said that I rushed) but everyone cheered and then it was another quick change all into black for my "Mcafferty" routine (from Cats) with the girls from Drama class. Nana and Grandad had not seen this before and they were surprised when I put a pair of cats ears on my head! The routine was very good and we all enjoyed it and then it was off home for a bath as by this time I had worked up a sweat. So we all had a really good night. Love You All, Connahxxxx PS Thank you Jan for the lovely poem xx
Posted on: 03/07/2009
Hello everyone. The Funeral for Logan will be held at St. Gerardine's High Church, Lossiemouth, on Saturday, July 4, at 1 p.m., thereafter to Lossiemouth Cemetery. All welcome. Family flowers only please. Donations if desired, may be given at the service, to Logan's Fund. As we cannot attend this weekend to mark the passing of another brave NB Child we have decided to make a donation to J-A-C-K's Fund, which is a reserch fund set up by the Parents of Jack Brown who passed away in May this year. Please all send positive thought's of support for Logan's Family tomorrow. Debbie, Jim, Chris & Connah
Posted on: 04/07/2009
Hello everyone. Guess what I was doing last night? I was on the stage at Rhyl Pavillion Theatre with all the boys and girls from my school choir and we sang lots of songs and three of the girls sang solo and they were really good. Mrs Potter, Mrs Rider & Mrs Cummins have been training us and we did really well. It was part of the "Festival of Arts" I have already done the dance part with Gayle's Prestatyn Dancers and there is also another part which I will perform in with Sarah's Drama Group. Nana and Grandad came to see us and they were waving, but I only did a little wave back as I was concentrating on the songs, they said that we were all very good. We didn't stay to see everyone as we had to get back to do my machine's and I fell asleep under the lights as I was so tired. I will be back on the stage at Rhyl Pavillion Theatre on the 31st of this month in te final of the talent compition, if you want to see me best to book now as a lot of the seats have gone. Love You All, Connahxxxx
Posted on: 30/06/2009
Some very sad news came to us early this morning. Logan Main from Scotland lost his 10 month battle with Neuroblastoma. Although he was only 3 years old he was very brave and fough his illness to the end. During his fight he suffered from a number of infections which did not help his chance of recovery. Please say a Prayer for him, his Parents and all those who were close to him and please send positive thoughts to all the children who are still fighting this awful illness. Debbie, Jim, Chris & Connahx.
Posted on: 25/06/2009
Hello everyone. Sorry we have not updated Connah's site for a while but everything just got a bit on top of us with school, dance class, dance compitions, football class, drama class, school sports day, school summer fair, choir practice and the odd visit up to see Great Grandma Broom, oh forgot the "what seems like hours and hours of hard labour" in the garden (one of us has green fingers and the other one doesn't!) and of course the nightly treatment regieme. Anyway Connah is doing Great. His dance group performed very well in the "Arts Festival Compition", He was very good on Bodnant School Sports day and got 2 second places in the race's but was not too good at balancing the been bag on his head and running in a straight line.
He got "Star of the Week" at school which is a good achievement. We had to take him to the hospital to have his ear "hoovered out" as some hard wax had got stuck in it and we bumped into his audiologist who had visited him at school and told us that his hearing and speech had developed really well in the last few months. Connah also picked some new hearing aids (still with Manchester City on).
The school choir is doing very well and they will be singing at Rhyl Pavillion Theatre on Tuesday evening again in the "Arts Festival". Connah really likes joining in and has last week become a "Bodnant Buddy", which is part of the school protocal to help children develope in a happy and friendly enviroment.
Thanks very much to Debbie Crawford from Airbus in Broughton who completed a 3 hour "Aerobathon" to raise money for charity and has made a donation to Connah's Appeal, which Airbus very generously increased by 10%. Thank you very much for supporting us and a big kiss from ConnahX.
So just to summerise, Connah is doing Great, having a smashing time both in and out of school. His energy level's are through the roof and his appitite is even bigger (except when its a toss up between eatting and football, football wins). I promise not to leave it so long before we update you all again. Love to you all. Debbie, Jim, Chris & Connahxxx
We had some bad news tonight, we heard from Logan's Family in Scotland that he had taken a turn for the worse and was very poorly today. Please send all your thoughts to help Logan and his Family at this very difficult time. Thank you all.
Posted on: 01/06/2009
Hello everyone, guess what I was doing this Sunday? Well I was up really early and very excited as me and Nana were going to Rhyl to walk the 5km’s for “Race for Life” It was the hottest day so far and we saw lots of people that we knew from last years walk and Nicola came to see us off. We had a good time talking to everyone and we finished the walk in 56 minutes. But after that we had to rush back to the car and meet Auntie Linda & Chantelle as Auntie Rhian had made a mistake and she had booked us to walk the 3km’s for Nicola’s Fund in Wrexham. So Nana had to drive like a looney (which is quite normal for her) and we got to Wrexham just in time to see all of the walkers disappearing over the hill. So me and Chantelle ran off and we ran nearly all of the 3 km’s, Nana and Auntie Linda did good too and they were not the last ones in. At the end of the walk there was some amusements so I spent an hour jumping up and down on the bouncy castle whilst Nana had a chat with all of the other families that we had not see for a while. Then it was time to go home and we got in just in time for Grandad’s phone call, I could not talk to him for long as I wanted to go out and play football in the garden with Monty, but I did tell him about me and Nana getting medals this morning. Nana did really well as she is full of a cold. Only 8 more sleeps until Grandad is home yippee. Bye for now, Love You All. Connah xxxx
Posted on: 29/05/2009
Hello everyone. I have been away on a caravan holiday to Portmadoc and we had a smashing time. We took my school friend Thomas and his Brother Dillon and we all had a really good time. The weather was hot and sunny (with a little bit of rain sometimes) and we went to the beach for the day and made sand castles and had lots of fun but Thomas's Mum did get a bit red and Nana forgot to bring my hat so she was going to put a hankerchief on my head but I said "no way". We played lots of football and had a BBQ outside, Nana got covered in smoke as the wind kept blowing it all over her. They had a talent contest on the camp and I got into the semi-final with my dancing. Then we went off for the day to Portmerrion to see the village where Nana said they made a tv program called "The Prisoner". So we all had a smashing time. Next time we will go in the camper van and take Grandad. Thanks Auntie Rhian for arranging it, it was a good break and Monty went on holiday too, but he went to the kennals for his holiday and when he came back he had a nice hot bath and then fell asleep on my knee wrapped up in a towel. Back to school on Monday and we are counting down until Grandad gets home and Auntie Sylvia is coming to visit next week. Love You All, Connahxxxxx
Posted on: 17/05/2009
On Friday the 15th Debbie & Connah along with Auntie Sylvia, Uncle Nils & Auntie Carol attended the memorial service at St. Werburgh Church, Wembury,
It is not my place to say that Jack fought harder than any other child that has battled with this disease because every one of them has fought it to the last second. He did prevail against it for longer and through countless protocols of treatment, scans and examinations, in order to find a cure. This is a testament both to him and his Family that they have endured so much over the last four years. Jack always had a smile and a laugh and this will make us able to always remember him in our home and in our hearts. God Bless You and all of the other Children who have passed before you.
Love to You All, Debbie, Jim & Connah xxx
Posted on: 06/05/2009
It is with Great Sadness that I have to inform you all of the death of Jack Brown. He passed away on the 3rd May after a very long and hard fight to beat NB. He and his Family are in our Prayers and we would ask you all to take a moment to think of him. One small boy who indured his treatment with tenacity, resiliance and good humour. He will be missed. Our Hearts and thoughts are with all of his Family. Debbie, Jim & Connah.
Posted on: 29/04/2009
Hello everyone. Last Friday Nana, Grandad and me set off on the very long journey up to Auntie Sylvia’s & Uncle Nil’s house in Ellon in
Auntie Carol & Uncle Terry had already arrived and we all had a nice drink before we got ready to go out for dinner. We went for dinner at a nice place that belongs to Dario & Aryana’s Mum Yvonne. Before dinner we met all of the people who were going to walk in the race next day. Scott (Mall Monster) his Wife Margret, Yvonne & Tony, Karen (
Next morning we were all up bright and early for the drive up to Balmoral. Grandad was not feeling too good as he had a bad back from driving and a bad belly from a chill he had caught. Any way we all set off in different cars and Grandad used the SatNav to get us there, we all thought we were lost as it kept taking us down some very tiny roads but we got there in time for the race. Uncle Nil’s was waiting for us at the car park and showed us where to go. This year we only had a short walk and it took us right passed the Castle (but the Queen wasn’t in). There were lot’s and lot’s of people and some even had kilts on! We all got ready and Scott put on his Monster suit and everyone gave there bags to Grandad to look after as his race was not till later on and then it was time for the walk so we waited at the end till everyone had gone so that we could have a group photo, then off we set on the 5km walk.
Jan, Auntie Carol & Uncle Terry set off at a good pace and I walked with Yvonne as we were a bit quicker than everyone else, then came “The Monster” with Auntie Sylvia & Uncle Nil’s followed by Nana who was having a “good gab” to Margret and then came the car that picks up anyone who is not well. It was a nice day and we all enjoyed the walk and a couple of times I had a run with Yvonne. We all finished and I ran across the finish line just ahead of Yvonne. Nana was very surprised when she crossed the finish line and they announced her name on the loudspeaker (she wanted to keep it a secret that she was last in!). We all got medals and I had my picture taken with MR. MM (Mall Monster)
Then it was Grandad’s turn to do his 10km run. He was not feeling very well, but he gritted his teeth and ran round and on the way into the finish I held out my hand to give him a push on to the end. While Grandad was running we all sat in the sunshine and had a nice picnic on the grass and I had a good time playing with Aryana and Dario and a couple of other boy’s. It was a smashing day and we all said our goodbye’s in the car park with promises to come back next year and get even better times (that is everyone except for Grandad who was looking a bit ill by now).
We drove back to Auntie Sylvia’s and I fell asleep in the car and did not wake up until 2 hours after we got home. Then we all had a nice meal and it was off to bed before the long trip back home on Sunday morning. It was smashing meeting everyone and thank you to everyone who walked with us especially Auntie Carol & Uncle Terry who had come all of the way from Dorset and a Very Big Thank You to Everyone who sponsored us and supported us with Positive Thoughts to get us round (especially Grandad). I took my medal into school on Monday and Miss Murry let me show it to all of the class. Love You All Connah xxx
Posted on: 28/04/2009
Hello everyone. The weekend before we went back to school I went to Rachel's Birthday Party at Geronimo's. We had a super time and did lots of running around and I even had a few games of air hockey with my friend James. Thanks for a smashing party Rachel. On Monday after Easter I went back to school and told everyone about going to Poland and to Man City but mainly about being at Wrexham FC and playing on the field with the team, it was really GREAT! Tomorrow I will tell you all about my trip up to Scotland. Love You All, Connahxxxx
Posted on: 21/04/2009
Hello everyone, guess what at weekend I had my first ever sleepover at Thomas's house, it was really good fun and we played lots of games and then stayed up till late talking with Thomas, Dillon and Me. Then next day we were upearly and played on the Wii. Nana and Grandad even managed to go out for a meal so we all had a great time, thanks Thomas's Mum & Dad. Then next day I went to Rachel's Birthday Party at Geronimo's and had more good playing. I was really tired on Sunday night and got a bit grumpy with Nana and Grandad when we had to do machines. It was back to school on Monday to tell all my friends what I had been up to over the Easter Break. Hope you all had as good a time as me.! Love You All, Connahxxx
PS Can you all please think of Jack in your Prayers as he is not too well at the moment and we want him to get well quick, so lots of Positive Thoughts from Everyone please.
Posted on: 16/04/2009
Hi everyone. This is an update for the last two weeks, which have been a rush and very stressful. Just after I returned home we flew off to
The scans went very well, but we had no news when we returned home on the Wednesday. We had to wait for the results to be couriered to us after Easter. This was very stressful as you can imagine. But it was business as usually with a visit from Auntie Jean for Rieki and we all enjoyed our Easter with an early morning egg hunt in the garden a trip to Manchester City courtesy of The Trisha Show and a Fabulas day out at Wrexham FC.
On Saturday Chantel came round to visit and we went for a walk in the woods and brought back some branches that Debbie. Chantel and Connah decorated with Easter decorations. Then on Easter Sunday Nana was up very early in the morning giving the Easter Bunny a hand and a little later Connah had lots of Organic Easter eggs to search for in the garden with the aid of “ace sniffer dog” Monty. Then it was off to collect Bobby and Nathan and we all went off to
On Easter Monday we had a real treat, we went off to Wrexham FC where we were met by Linda who gave us a match program and looked after us. Connah was taken off to the shop where he was given a complete Wrexham football strip (we had brought his boots with us). Then it was off to get changed. We met Phill Saddler on the way into the player’s dressing room and thanked him for arranging this for Connah. Then it was into the dressing room and meet all of the players and get them to autograph the program, they were all really good and shook hands with Connah and asked him what he thought the score was going to be. Then it was back outside for pictures in the tunnel and into the “player’s dugout”. Then the Team came out to warm up and Connah had a kick around with Ashley the Team Captain and Neil Taylor No 11 and then Dean Saunders the Team Manager came over and had a kick about with Connah and gave him some coaching on kicking with his left foot and unfortunately received a couple of kicks on his shin’s whilst dribbling with Connah (whoops!).
Then Linda took Connah off the pitch and they waited for the team outside the dressing room whilst the “pre-match” talk went on and then guess what, Connah lead Wrexham FC out onto the pitch, went down the line of the opposing team and shook everyone’s hand and then after a quick warm up with Team Capt Ashley Heywood it was into the center circle for the match photo and then into the stands to watch the game. It was a smashing game with lots of thrills and good football. Unfortunately Wrexham lost 1 – 0. However we had had such a splendid day and been treated really well by everyone at the Club that we will be traveling back next season to watch Wrexham play on a regular basis. Thanks to everyone at Wrexham FC and thank you Chris & Dave for arranging all of this for us, it was Brilliant.
So the scans finally arrived and there was a lot of information to digest. A list of questions has been fired back to Dr. Miroslaw in
Six other families have contacted us, also in the same situation where conventional treatment has failed and they are now following the same treatment as Connah we pray that God grants them the same success with their children that we are having with Connah. Love to you all. Debbie, Jim, Chris & Connah.
Posted on: 15/04/2009
Hello everyone. We had a phone call from Yvonne (Jack's Mum) tonight he is having treatment in America at the moment. Tomorrow is a big day for them as Jack is having scans done to see how the new treatment is going. So please all spare a couple of minutes to send Jack some positive thoughts tomorrow please. We will update you all on what has been happening to Connah tomorrow. Love to everyone. Debbie, Jim, Chris & Connah.
Posted on: 15/03/2009
Hello everyone, it’s been a busy time again. I had to go to the hospital last week, don’t worry it was just for a check up. I have grown 2cm’s (1 inch) and I now weigh 32kilo’s (0.5 kilo up on last time) so Nana says everything is going in the right direction. I had my friend Dillon round for tea and had a smashing time, running round and playing with all my toys, Nana says we can do it again when I am 21 as she was a bit stressed out! Then we had some visitors (Zac’s Mum & Dad and Nana June) to see how my treatment is done and we all went out for dinner to the pub (Nana phoned them and asked if she could take my Organic dinner for me). Then on Friday at school we had “Bodnants got Talent” to raise money for “Red Nose Day” so I did my dance routine and everyone really liked it and the results will be on the school website next week with some photo’s. Grandad will be home in two more weeks and then we can finish making my “Star Wars Lego fighter”. That’s it for now. Love You All, Connah xxx PS Monty & Scoobie are being good boys.
Posted on: 03/03/2009
Hello everybody, I have had another smashing week with lots to do at school. We had to do a project on Welsh Heroes so I did a story on Lynn Davies who won the medal for the long jump in the Olympics. He lived in the same village in
Posted on: 24/02/2009
Hello everyone, you will not see me on the Trisha Show until May so lots of time to practice getting the right station (Channel 5). I am fine and went to dance class on Monday night and I am remembering all the steps! Grandad has gone back to work (for a rest Nana says!). Thanks to everyone who is sending us messages and thanks to all of the "Young Ladies" in Auntie Emma's class who are doing fund raising for me especially Natalie who does the messages xx. Must go as I have lots of home work, I have been doing a story about Lynn Davies for a project on Welsh Hero's and its a lot of writting (especially when Nana rubs it out and makes me do it again as I was not very neat!). Love You All. Connahxxxx
Posted on: 20/02/2009
Hello everyone, what a busy time I have had this week! On Wednesday we went off down to Maidstone to go on the "Trisha Show" it was a long way but we were all on TV and we got to meet Trisha and she was really nice and she has arranged with Man City for me to go for a day out and see the game and meet the players, woweeee! All the people who support her were very friendly too and they really looked after us and guess what, but don't tell anyone I said, Grandad had to have make up on to go on TV, he didn't like it at all! Then we came back on Thursday night and today you won't believe this, me and Grandad were picked up in a "Hummer Stretch Limmo" by the "Journal Newspaper". They had picked me as their Child of the Year and we spent the day driving around going to different places that advertise in the Journal and I met lots of nice people and children and they had made me cards and gave me some nice presents and we had a really smashing meal at the "Eagle & Buckle" Inn and they have invited me back to a special family day out with Nana & Grandad. So thank you Journal for picking me.
Also today was Auntie Sylvia's Birthday, so Happy Birthday again Auntie Sylvia. Tonight we had treatment and tomorrow morning its football training, I am really looking forward to that, but Nana & Grandad are looking a bit tired so I will try and be good and not do too much wrestling with them over the weekend! Love You All Connahxxxxxx
Posted on: 12/02/2009
Hi everyone. We thought that we should just clear up the story about how Connah’s treatment came about as we have been receiving lots of e-mails asking us about it, so rather than write lots of individual e-mails we decided to put the story on Connah’s website.
During Connah’s chemotherapy we were surfing the internet looking for anything and anyone who could help raise Connah’s chances of surviving this illness. We had started already using positive thinking and getting Connah doing regular exercise and keeping up his school work to keep him active. Then we saw a Bobby’s Story on the internet about a little boy who had had a NB tumor removed and was doing well on a totally organic diet. So we contacted Kevin Wright Bobby’s dad and he told us all about filtering water, juicing and organic food. No micro waved food and not to use non-stick pans. Straight away we began filtering Connah’s water and gradually changing his diet over to organic, cutting out all fast food, chips, sugar and lots of stuff that kids love. But we explained to Connah why we were doing it and he excepted that we were doing it to make him better. We also threw out the micro-wave oven and changed all our pans and bought a “Masticating Juicer”.
Also Auntie Jean contacted us and began the Reiki Healing which we believe has been a tremendous help to Connah. As soon as we started the organic diet and filtered water and juicing Connah stopped getting a temperature between bouts of chemo. This was great as the routine had been 5 days in hospital on chemo, 3 - 4 days at home then back into our local hospital for 2 days on antibiotics, 3 days at home and then back for more chemo. So to have a whole 10 day break at home was great. Also Connah had been on 8 moveacol a day to help his bowl’s move, we were able to stop those almost immediately.
In April came the news that Connah’s tumors were “inoperable” which was a major blow, but we shrugged it off and soldiered on. The only option left was Full body radiation with topotekan. We have recounted several times how we went down to
We also introduced the following supplements over the next few months: Aloe Arborescence, Apricot Kernels, Hawaiian Noni, Organic Mangosteen Juice, linseed seeds and Maximol. All available on the internet. The fruits we use in the juicer are: Strawberries, Mango, Kiwi fruit, Green Grapes, Apples also Celery. However these were selected after a check of Connah’s blood by Dr. Bob Jacob’s of the Society for Complimentary Medicine in London (020-7487-4334) who provided the Aloe Arborescence and we also had Acmos Energy Balancing done look up www.headtohealth.co.uk and they supplied the Hawaiian Noni, Maximol, Shampoo, bath & shower gel. The Mangosteen Gold we get off the internet and the organic apricot kernels, linseed seed’s and alfalfa we get from any health food shop.
In August Kevin phoned us from LA were he was attending a seminar on alternative medicine being held by prominent health professionals. He said that he had met two Doctors who ran a clinic down in
So in late October 2007 we all flew over to the Hope4Cancer Clinic in
This went on for 12 days at the end of the treatment we went back for another ultrasound scan. This showed a marginal decrease in the blood flow to a number of the tumors. Nothing earth shattering but a step in the right direction as if you can stop the blood flow to a tumor the tumor dies. We walked away from the clinic with 17 weeks supply of pills, an ultrasound machine and the knowledge that this was going to be a long slog. However our philosophy was that the radiation treatment that we had turned down seemed to wipe out the cancer in one quick devastating blast, but in most NB cases the cancer came back more virulent than before. Our thought was if you take the time to kill it slowly then its going to stay dead for good.
Whilst at the clinic we made good friends with Dr. Tom Cleary and his Wife Jenny. Tom had offered his assistance at any time we needed it in the future. So we came home and searched the internet again. The “Full Spectrum light bulbs” we found in
We were now up and running and for 5 nights a week Connah had his treatment from Debbie with the assistance of two of our friends when I was away at work. At first the treatment was to all of the tumor areas and was taking about 3 - 3.5 hours a night, with Debbie spending 30 minutes a night hanging over the side of the bath using the ultrasound machine (back breaking stuff). Connah sometimes threw a tantrum when he had had enough and splashed the walls and ceiling in olive oil and water (olive oil helps the ultrasound move over the body without catching) but in general he was very good.
The treatment was kept up all through the months except for a short break to Centre Parks and when we went up to walk / run the Balmoral 5km / 10km run. During the months from Jan - July we had several private ultrasound scans done, which showed us that the tumors were not growing and that very gradually the blood flow was reducing. We asked Connah’s Oncology Consultant (who knew nothing about the treatment) if she would do and MIBG Scan to see how the tumors were doing. She said that this was invasive and there was “no clinical evidence that anything was happening inside Connah” so no she would not. This all came back to us saying no to the radiation treatment we believe!
In July we looked around for a private clinic that would carry out a scan. In
Treatment continues until we find another clinic for the scan this time through our friend Paullina who is Polish and arranged for us to have CT & PET Scans in
The scans and the report showed that there was only uptake of the dark contrast in one tumor site, the primary tumor. All the other tumors had no blood flow and no signs of activity. The primary tumor had reduced blood. This was very good news, in fact the best news we could hope for. We went home and discussed the scans with our GP who has always been very supportive and with Dr. Tom who told us to now concentrate on the one remaining tumor site. Which is what we have been doing since September. We had an ultrasound scan done on the primary tumor last week and the blood flow to the tumor is minute.
The Mustang 2000 Laser & Probe we contacted Dr. Radaev at: Dr Radaev firstname.lastname@example.org;
The Full Spectrum light bulbs came from www.gbbulbs.co.uk but we had to build the frame for over the bed.
The ultrasound applicator can be bought from “Encore” or The Chattanooga Group.
The Sauna is a FAR Infra-red sauna and also can be purchased off the internet.
The photosensitizer that we use is: Chlorin E-6.
Last word. We of course are not Doctors or Health Professionals. We can only tell you what we have done for Connah and how he is today. We have no reason to promote any type of equipment, food or supplement other than Connah’s continued good health in beating this illness. This is “Alternative Medicine” and you should always seek a medical opinion first. As you can see from above this is not an over night quick fix and is a long process and at roughly 3 hours a night 5 days a week is very tiring. To give you an example of how tiring, I went to have my eye’s tested last week at the end of the test I got my wallet out to pay, the Lady behind the counter said “Sir at your age you don’t need to pay”. She had just added 10 years to my age. To save Connah worth every line and wrinkle!
Posted on: 08/02/2009
Hello everybody, what a weekend we had, lots of rushing here and there and reading all of the messages that have been coming in, thanks everyone who left a message or e-mailed Grandad. Well on Saturday morning it was off to football training. I didn't score a goal but I played well in defence Grandad said then we went home to do some reading, walk Monty and have a practice for the dance compition. We went to Prestatyn at night and there was lots of good dancer's and we had to watch a few before it was my turn. They all cheered when I finished as I had done a different dance no headstands or flips that will come later. We had to stay right to the end and then they announced that I had got through to the next round in June at Rhyl Pavillion so you will all have to come and watch. Then this morning we were up early and off for my dance exam in Rhyl with Gayle. I danced with Lorna and they said we did very well but we won't know if we passed until 2 weeks time so keep you fingers crossed.
Grandad is busy checking out all your e-mails so if he is slow getting back to you its cause his fingers are not too fast on the keyboard. I said Grandad I can do it a lot faster than you, do you know what he said? Yes Connah but no one can read it! Oh if anyone read the paper and thinks Auntie Jean who does my Reiki is a man she isn't they just messed it up! School tomorrow! Love You All. Connahxxxxx
Posted on: 07/02/2009
Good Morning everyone. Thank you all for your messages of support on the website in the news paper and telephone calls we appreciate them all. For those of you that have given us information we will look into it and see if it will help Connah. There were a couple of things that had been changed in the paper from the article which we agreed to such as "Connah had be offered the drug Hycamtin", what we had been offered was "Full Body Radiation with a drug called Topotekan attached", we travelled to London and spoke with the Consultant and because the Consultant advised us that there was the possibility of the radiation seriously harming Connah's vital organs we declined the radiation treatment. Also we contacted Cancer Research about the statement by Dr Julie Sharp "two thirds of children with Neuroblastoma can be successfully treated" Anyone whose child has Neuroblastoma Stage IV would be delighted with that success rate. Dr. Sharp could not be contacted and has not returned our call. A more believable qoute from Connah's NHS Consultant who he see's for a checkup every 6 months is "I have treated children with this disease for the past 12 years and out of roughly 100 children I know of only one long term survivor". We would say that this is a more accurate statement and shows how deadly the disease is. However the article's were good that they both raised awareness to: Organic diet, filtered water, health suppliments, Rieki and alternative medicine and we thank the papers for running the stories.
There was also a big splash on tv and in the papers about Jade's illness last week, on one of the stations "GMTV" Debbie bid phone in with question to Dr. Hillary about whether radiation and topotekan would help Jade, however the question was not aired on the program. To those of you that have asked for us to be more specific about Connah's treatment and the suppliments and juices we use we will be doing this shortly. We have no doubt that we are travelling down the right route for Connah to beat this illness and we thank everyone who is supporting us on this journey in word, thought and deed. We Love You All. Debbie, Connah, Chris & Jimxxx
Posted on: 28/01/2009
Hello everyone. You won't believe this we went on two school trips, the first one was to the Connah's Quay Power Station and they showed us all shorts of neat things about electricity and Grandad came and helped the Teachers out. Then on Monday we went to the Mosque in Rhyl as we are learning about Islam in school. To help our class in our studies Grandad's friends in Yemen sent me a "Prayer Mat" a belt and a robe that you wrap round you, also one of Nana's friends donated two ladies dresses for the class to see what Ladies wear. We are learning lots at school. At weekend I went to football training on Saturday morning and I scored a goal when we were doing passing training. On Sunday we went bowling and took my school friend Sam who lives in Prestatyn, this time Grandad won, which is good for us boys as its usually Nana! Tonight its Drama class and we are doing "Chitty Chitty Bang Bang" so we have to take paper, scissors and colour's to make some scenary. I am doing well on my reading and Grandad has been reading me the book that Jac Jones gave me for my Birthday when I am under the lights having my treatment at night, its a good story called "Sion and the Bargain Bee". Auntie Jean is coming tomorrow for Rieki and Monty is going for his injection's at the vet at the same time, I think that I am getting the best of that deal as there are no needle's in Rieki. By for now, Love You All. Connahxxx
Posted on: 14/01/2009
Hello Everyone, you won't believe this, we went bowling on Saturday and I got 2 strikes and beat Nana after ages of her beating me it was really good, yipeeee. But on Monday at Dance Class I was naughty and messed about and Nana got really upset so "I got what for" when we got home and then I had to tell Grandad on the phone and he was not pleased either. So on Tuesday I tried very hard at school and got a house point for being good. Grandad said well done but keep being good. Hi William school is really good here we are always doing something new, how is the Chess going? Mabe this year Chantelle you will get to see Santa, but only if you are GOOD (like me ha ha ha). Hi Luca, Elle, William & Klien, We all had the Best Christmas ever in that snow lucky us, Grandad is still on vitimin pills after pulling me round in that sled for 3 days (good old Grandad). Must go as we were almost late for school yesterday as the electric went off so the alarm clock didn't work so Nana and me slept in! Love You All. Connah. PS Message for Angela (Logan's Mum) If you would like to contact us at anytime please e-mail email@example.com and anything that we can do to help we will. Give Logan a BIG hug from us ALL.
Posted on: 11/01/2009
On Friday night we had the very sad news that Jacob Marsland had passed away. Jacob started his treatment at Alder Hey just as Connah was finishing his chemotherapy almost 2 years ago, it seems just a short while ago looking back but we know that when you are fighting this illness every day can seem like a life time. Our Hearts and Prayers go out to his Family. Please make time to say a Prayer for Jacob and all of the children and families that are affected by this illness. Debbie, Jim & Connah.
Posted on: 07/01/2009
Hello everyone, you won’t believe this we had the “Best Christmas Ever” over in
Next day we went and had loads of fun in the snow. Me and Grandad made a snowman and we put Nana’s name on it with bits of tree bark and Grandad rolled me in the snow and Nana got stuck in it and had to be pulled out. Then we went sledging down a big hill and Me and Grandad went down on the same sledge we had loads of fun and Nana found some shops to spend money in so she had a good time too. All the food was really good and I eat it all. We took my supplements and in the cabin there was a sauna so that I could de-tox at night, Nana and Grandad were very tired at night but I still had “Loads of energy left”. Next Year we want to go back and then I can learn to ski at ski-school! Also we met lots of smashing new friends. The Harvey Family who are in the Army and the Bingham’s from Australia William from
Ps Sorry we were slow putting this on but Grandad has been ill with the cold/coughing bug and although it took me and Nana 3 weeks to get well Grandad did it in 7 days with Nana constantly making him have horrible medicine, but as soon as he was well it was time to go back to work (more Positive thinking from Nana!).
Posted on: 05/01/2009
Hello everyone, Sorry we have not put on about our trip to Lapland to see Santa, but Grandad has been ill with lots of coughing and sneezing, same as me and Nana before Christmas. Any way we will be doing in shortly. Just wanted to say a quick Thank You for All of the Brilliant presents I got over Christmas, especially "Kojak Bear (who I have re-named Sam) who came all of the way from Jan and her Family in Georgia. Our friends Jack and his Mum Yvonne are off back to America shortly and we are thinking of them and Praying that all goes well. Also Auntie Sylvia is not well at the moment so we are thinking of you too Auntie Sylv. Love to You All. Connahxxxx
Posted on: 29/12/2008
Hello Everyone, On Saturday we returned from Lapland where we had spent the best Christmas ever, however I will let Connah tell you about that tomorrow. We returned to some sad news, a good friend of ours Tom who has been helping Connah for the last year had passed away. Tom had had Cancer for a long time and had fought it valiantly for years. Tom has helped us imeasurably and he will be remembered in the Broom household forever. Our deepest condolences go out to his Wife Jenny and his Family.
Also Jacob Marsland is really poorly, please send him and his Family your thoughts to get them through this very difficult period. Jacob has been a real soldier and has fought this illness as hard as anyone could. You are in our thoughts and our Prayers Jacob. We Love You All. Debbie, Jim & Connahxxxxx
Posted on: 09/12/2008
Hi everyone. Nana has been ill all week with a rotten cold (but I didn't catch it) and now she has almost lost her voice, Grandad said she should have waited till he got home! We went to Nicola's Fund Christmas Party at the Pavillion in Chester Race course last Sunday and we had a SMASHING time thank you very much to Steve and Debbie who also sent me to Centreparc's at Easter. Any way there was lots happening at the party and got some presents and won a dance compition (I got HULK boxing gloves, what were they thing of!). Auntie Rhian was there and Auntie Linda and Chantelle came with us and we saw some of the people that we met at Centreparc and we all had a very good time and you won't believe this, there was a Chocolate Fountain. Thanks again to Debbie and Steve for inviting me.
Bad news, I was naughty at school and ended up in the Orange Zone (thats one below being grounded till your next Birthday Nana said). Nana was upset and Grandad made my ears burn when he talked to me on the phone. I won't be going in Orange again (I hope!).
Good news is Nana and me are going to recieve an award on Wednesday night from the Lady Mayoress of Prestatyn (Whooooooooooo). We will tell you all about it on Thursday and last week we had the rehersal in Church for our Christmas Nativity and Nana and some of the other parents came to watch. Well I was performing in my Donkey suit and putting all of my hip swinging and arm waving into the songs, Nana said everyone was laughing and she was crying (come on Nana I wasn't that bad). Thats all for now there is lots and lots going on up to Christmas. Thanks to Nicola for cutting my hair. Love You All. Connahxxxxx
Posted on: 01/12/2008
Hello everyone. Guess what I have been doing? Lots and lots of things. I had house points at school. I went bowling again with Nana (and she won again!). I have been practicing for the School Nativity Play and last year I was a sheep and this year I am a donkey, so Nana went and got me a donkey costume to wear and the only one that would fit me is for a 9year old and I have to squeeze into it, I am getting really BIG! On Thursday night we walked into Prestatyn with all my school friends to sing at the turning on of the lights for Christmas. I really enjoyed it and sang and waved my orange glow stick around. In January I am doing an exam for my dancing so Nana had to get a letter from our Doctor to say what was the matter with me and if I am well enough (ha ha ha) to join in. Nana said that she was very pleased by our Doctors letter as it says that “Connah is well enough to do anything!” I know I am better but it is good to hear the Doctor say good things as well. I had a good time at “Kids Club” on Saturday and Nana had a good “gabbing” time with Auntie Brenda who looks after us all. Nicola and the Girls at the hair cut shop are doing very well at selling tickets for the nice whiskey that Auntie Sylvia and Uncle Nils brought down form
Posted on: 20/11/2008
Hello everyone. A lot has been happening this last 2 weeks. I had loads and loads of cards for my Birthday including one from the Lady Mayoress of Prestatyn. Thanks again to every one who gave me all those presents as well, Grandad is going to help me make some of the models when he comes home next. At school I have won some more merit marks for good work and we had a special “Pajama” wearing day to raise money for “Children in Need”. Grandad was worried that I would catch a cold but Nana made sure that I wore lots of clothes underneath. We have been bowling twice, once with my friend James, Nana won twice (so let’s not talk about that)! Dave updated my website and put some smashing drawings on of Monty, Scoobie and Me and Ben 10, and the drawing of me looks just like me. Thanks Dave. Nana and me went up to see Cousin Phoebe and she is doing really well, so keep your chin up Phoebe. Dance Club and Computer Club are still going on and I am having a good time at both and my friend James has joined Dance Club so there are 2 boys now! That’s all for now. Love You All. Connahxxxxx
Posted on: 10/11/2008
Hello everyone, What a Great time we had at my Birthday on Saturday. Nana & Grandad have been planning it for ages and lots of people travelled from all over to attend, Manchester, Aberdeen, London, Liverpool, Ardfinnan, Corfe Mullen and all over Wales. Thank you to everyone who came and had a good time and thank you for all of the smashing presents (did anyone think that I was going to wait till my Birthday on Thursday to open them ha ha ha). The day started with us all rushing to get ready and people started to arrive at the house and guess what Nana was still in her dressing gown! The with one hour to go the man who was bringing the special fire engine for all of us kids to travel to the party phoned and said that he couldn't come so Grandad raced around and found another man who brought a special bus for us all to travel in. Before we left we had photo's with me, my cake and some of my special friends including Jack Brown, Emma, Chantelle, Megan, Holly, Nana, Grandad & Dad. Then it was onto the bus and off to Craig Park for the first party and we did Kareoke singing all the way!
When we arrived lots of my friends were already there and all the room was made out with "High School Musical" Balloons and decorations (For Every Occaision Rhyl) and they were playing "Lets Go Wild Cats"! Then we had a smashing Circus one man Show (James) and he showed us how to do lots of circus stuff and we all got to practice, plate spinning and with shuttles on string and lots of other cool stuff and then we had our party food and everyone sang "Happy Birthday to Me" and I blew out my candles. After we had all filled up on party food we went outside and had a smashing fire work display and I had my name lit up in fireworks (Sandling Fireworks) and Uncle Billy helped set it all up. Auntie Rhian (Clic Nurse) came and Everyone loved it and I had lots and lots of cards and presents, thanks everyone!
Then we all dashed home and had a quick change for the next party! Auntie Sylvia and Uncle Nils had gone over to visit Cousin Phoebie in hospital whilst the first party was on but they were back for the night time. In the evening we went back to Craig Park and when we got there a big man in a kilt was there to meet us and you won't believe this, he was playing the BAGPIPES! (Thanks Nigel). Lots and lots of people came for the party and thank you to everyone for such a smashing night. First off we had some music and then a Really Cool Singer (Thank You James Stone) who was so GOOOOOD and he liked mine and Jack's dancing and he got the party really going. After that we had a really food (All mine was Organic), but Nana and Grandad hardly got to eat any of it as they were so busy talking (gas bagging as Grandad calls it!). As soon as we had eatten we all dashed outside to watch the Best Firework Display Ever! and Uncle Billy had good fun blowing everything up Again! Nana organised a raffle which encluded donnations from our friend Richard (Pieroth Wines). The Auntie Sylvia read out a letter from her Church and one from the First Minister of Scotland! Scott (Trinity Mall Monster) who walked the Balmoral 5km's gave Grandad a cheque for £1,000. He had raised £500 in sponsorship and the Trinity Mall in Aberdeen had very generously doubled it, thank you very muchxxx. Grandad did a quick Thank You to everyone that has supported us over during the past 2 1/2 years and thanked everyone for coming and then it was back to partying and some more pipe music from Nigel. and I stayed up till 1am dancing and having a good time. What a Brilliant Party this was. By for now. Love You All. Connahxxxxx
Special Thanks to: Auntie Sylvia & Uncle Nils, Scott (Trinity Mall Monster), Nigel (Piper), James Stone (Cool Dude Singer), Uncle Joe & Auntie Veronica from Ireland, Auntie Carol and Uncle Terry from Dorset, Auntie Jean (Thanks for the Great Organic Cake), Joanne, Adrian and Kids from Manchester, Auntie Muareen (Who helps me with my treatment), Laura (Evening Leader), Linda & Chantelle, Richard, Yvonne, Conner, Rhian and Jack, Uncle Billy & Auntie Heather, Donna & Staff at Craig Park, Mr Brown & Mrs Leech (School Teachers), Auntie Beckie, Jack Jone's (Childrens Book's Writer) thanks very much for the picture of me as Spiderman and the new book, Nicola and Girls from the Barbers at "The Junction Box, All our Family from Glossop & Manchester and All of Our Friends from Wales.
Posted on: 02/11/2008
Hello everyone. Well I had a whole week off school and had lots of fun, except for my visit to the dentist. He said that my teeth were all good (Hurrah) but in a few years time I will need to have a "brace" fitted to make them straight (Booo). Grandad didn't tell me what a brace was but it doesn't sound too good! On Saturday I went to Harri's Birthday Party, it was good as it was a football party and we had a good game, thanks Harri for inviting me. We didn't go camping as it was too cold and there was snow at the place we were going too, so Grandad said that we would have fun at home instead. So I went bowling with my friend James and also had a good run round in "Funzone". Also I went to see my friends in Holiday Club and on Friday I dressed up as a scary Dracula for the Halloween Party and then me and Grandad went doing "Trick or Treat", good job everybody treated me as I don't know any tricks! Also just to say "Good Luck to Cousin Pheobie as she is going in for an operation tomorrow. Back to school in the morning, oh I did read 3 big reading books and do some hard homework as well. Night, night everyone. Love You All. Connahxxxx
Posted on: 27/10/2008
Hello everyone. Well school is over for a week, but before we finished we all went to Church and sang in the Harvest Festival. I sat between Zak and Zackery and we all sang well. Grandad came to watch and we did lots of waving at each other. We it came to our class song we were all singing well and doing the actions, but afterwards Grandad asked me why I was doing one that no one else was, "oh I saw that on tv, its "walk like and Egyption"! Also I went to Zak's Birthday Party at Geronimo's in Rhyl on Sunday and we had a good time chasing round. Thanks Zak for inviting me. We are hoping to go away in the Ben 10 Mobile but the weather is getting a bit cold and windy so we will see. Nana has been busy painting the walls and Grandad has been getting rid of all of the rubbish that the workmen left behind. Thats it for now. Oh Grandad put a picture on of him and his friend Capt Walid who was flying one of the planes that brought him home the other week, thank you for getting him home safely Capt Walid. Love You All. Connahxxxxx
Posted on: 11/10/2008
Hello everybody. I had another good week at school, but Nana and me have had a bit of a cold, Grandad says that I have to get rid of it before he gets home next week, so I said that I would give it to Auntie Maureen he he he. The cold didn’t stop me from going to Dance Class though or to swimming and it was getting a bit better so I even went to Choir practice. On Friday after school I went to James’s house and had a smashing time playing with him and his sister, thank you for having me. Also I won a merit mark at school for good work and I got a program from
Posted on: 08/10/2008
We would like to ask you all to send your Positive Thoughts and Prayers for Jacob Marsland who was in Alder Hey Hospital just as Connah was leaving. He and his family are going through a bad time at the moment and I am sure that they would all benifit from knowing that we are thinking of them. Thank You All. Love Debbie, Jim & Connahxxxx
Posted on: 04/10/2008
Hello everyone. I have been doing lots again this week. We couldn’t play football though as it was raining and the field was all wet. But I did go dancing and I did go to Choir practice and they said that I was a really good singer. Also I fell over in the play ground as I was rushing to get out and play with all my friends at lunchtime but I'm okay. Nana is a bit upset as I am not eating all of my lunch as I am in a rush to get out and play. I was in trouble at Dance Club though, we are doing a dance to “High School Musical” and there is a bit where the boy runs and slides on the floor on his stomach, well I tried it and ripped both of the knees on my pants, so Nana will have to do some sowing before next week, Grandad said put some tape over them, but that’s not right is it? Scoobie is getting bigger and Nana says that we may have to get a bigger case for him as he is having trouble turning round past his house, I bet Grandad will say “stop feeding him so much”! Also we went on a school trip and did lots of stuff on computers and I made a computer picture, Nana came as well to help look after us. But last weekend was the best I went to James Birthday Party and we had great fun, I was playing with basket balls and jumping on the trampoline and we all had a smashing time, thanks James. That’s it for now. Love You All. Connahxxxxxx
Posted on: 24/09/2008
Hello everyone, I hope that you are all well and having a good time like I am? School is going good and now I have started going to "After School Club" So on Monday I was at Dance Class and we are starting something new, we are now doing a dance from "High School Musical", Grandad says that I should be able to do it blindfolded as I watch on tv and have been and seen the show in Liverpool. So yesterday it was swimming at school and then I went to Football Club after school, Nana had to dash out and get me some real football boots, and you won't believe this, I scored a goal and my team won! Grandad was really pleased when he phoned and said that I will soon be playing for Man City and that when he comes home he will take me to the shop and get me anything I want (I'm sure thats what he said but the phone was a bit buzzy hehehehe). Tonight it is computor club so soon I will be able to go on the computor all on my own!!!! Auntie Sylvia and Uncle Nils went home on Sunday, Monty is one inch shorter with all the walking that Auntie Sylvia gave him and Uncle Nils has been helping Nana with lots of jobs, I bet they need a rest now! Auntie Jean has not been well lately so come on Auntie Jean get better soon. Emma I will help you with naming your dog but you will have to tell me if it is going to be a boy or a girl so that will help me think. Thats all for now. Love You All. Connahxxxxxx
Posted on: 16/09/2008
Hello everyone. A lot has been happening this week, first I won the “Listening Cup” for being the bestist listener in class and I can keep it at home for one week so I have been showing everyone. I have been doing well again with my reading my friend James came round for tea and we had a smashing time. Then on Sunday morning Nana had a bit of a lay in so I got my reading books and sat in bed reading like a good boy. When Nana woke up she came through to say well done but I was laughing as well and then she saw the covers move and when she looked she saw that I had Monty in bed with me and I had been reading him stories, she was a bit cross as she had to wash the bedding, but I was good reading? I went to dance class on Monday and a new boy has joined so that makes 2 of us in class. Nana has signed me up for some “after schools club’s” Computing, Football and Singing in the Choir. Oh thank you Linda from NG’s as she gave Nana lots of pots to make up my school dinners in. That’s it for now, we are off swimming with the school today! Love You All. Connah xxxx
Posted on: 11/09/2008
Hello everyone. I am having a great time at my new school and doing lots of hard work, not like when we were playing in year 1. This week we went swimming but I was not allowed to wear my arm bands as we had to show the instructor if we could swim or not. It was okay as we were in the shallow pool. Nana came to watch and give me encouragement, which was good as Grandad has just gone back to work and I do miss him, but he will soon be home again. Today we had some people come and do a play at school and I am in Nana’s good books as the Lady who listens to me doing my reading has told her that I am really good and try very hard at doing my words, that’s all the help from Auntie Jenny & Nana. My friend James is coming home for tea with me tonight, we sat together on the bus when we went swimming, so we were “swimming buddies”.
Thanks for the message of support Jacob. We also read your website to see how you are doing, so well done to you too. Hope that you are enjoying school as much as I am. Thanks to everyone for your messages after my scans, bye for now. Love You All. Connahxxxx
Posted on: 05/09/2008
As you all know we have been awaiting the results of Connah's two scans in Poland. The initial report arrived on Tuesday, however we had some questions for Dr. Dzuik in Warsaw about some concerns we had from the report. It all turned into a bit of a trauma as the e-mails I kept sending him were bounced back as being recognised as "spam"! So I then faxed him the questions and asked him to e-mail me back, unfortunately Wednesday was the day that the power company decided to replace the rotted poles in the field so no electricity all day, which ment that we did not get the answers till late Wednesday night. The news was very good and I will just summerise what we have been told: Main tumour in the abdomen has grown by 5mm in the past 14 months (it has changed shape and shrunk in the other dimension). It has two large areas of calcification at the center (because of irregular shape difficult to measure), the blood flow to the tumor is very low, however it is still alive. The calcification within the lymph nodes is much greater. There is no up take of MIBG in any other tumors. All of the other tumours are probably dead. All of the tumours except for two have shrunk in size over the last 14 months. Connah has normal growth and the bones have normal PET (Position Emission Tomography) appearance.
We are over joyed with the news and thank the Doctors and Hospitals in Warsaw for their very kind and professional help. We will continue to do what we are doing until this final tumour is dead and we have won the fight. We would like to thank everyone for there help, support and positive prayers. Please keep going as we are not done yet, but we feel that we are definately winning this war.
We had a surprise treat for Connah last night, (which is why we didn't update the site yesterday) we took him to Liverpool Empire Theater to see his favourite, "High School Musical". He was so excited when he saw what was on, he was jumping up in his chair, dancing in the aisle, singing along and waving his arms, he loved it. And he was still in school at 9am this morning, as he is also loving his new school and is really excited every morning. He stays a full day and we take in his organic food, filtered water and his suppliments and Bodnant School are very supportive and cook his food at lunch time, and ensure that he has all his drinks. Tonight he will be going to see all his old friends at "Kids Club" to tell them about his news. So we have one really happy little boy. Who is doing exactly what he wants, just living a normal life. Love to you All. Debbie, Jim & Connahxxxx
Posted on: 01/09/2008
Hello everybody. Last week was very busy for us all. On Sunday Nana Auntie Paulina, Lucasze and me flew to Poland, it wasvery early in the morning and Grandad took us to the airport at Liverpool and dropped us off. We had a smashing flight and then we stayed in a big hotel in Warsaw. Next morning we had to go and see a Doctor to say if I was well enough to have a scan (ha ha ha). So the Doctor said yes. Grandad flew on Monday and met us at the hotel and we all went out for a play in the park, it was nice and sunny. Next day we went to the hospital for the CT Scan but before we went in the Lady (Violet) from TVP came to interview us all. Then I had to have my needle, but I was very brave and only cried a bit. Auntie Emma had done lots of good work with me to help me be brave and I had my bear to put my hand on and the nurse was very nice, thanks Auntie Emma for all your help xxxxx. Then I was on the machine and had my scan and they said that I was very good. Afterwards I couldn't go to the park as I still had the needle in my arm (canular) as I was having two scans.
Next day we went to the second hospital for the next scan. The Doctor examined me and said that he couldn't feel anything (which is good) and he lookd in my eye's and couldn't see anything (which is good) and then the asked me to drink some stuff that tasted really yuk!!!! and then they put a drink into my needle and then they took the needle out and I was more brave this time and Nana had to tell me funny stories while the chemicals went round my body and to keep me still she was doing funny walks and messing about and later Grandad told her that there was a camera in the room and everyone could see her on the monitor (ha ha ha). Then we went in for the scan and it took about one hour. The Doctors and Nurses were very good and came in and gave me a "High Five" afterwards.
Next day we had a free day so we went to the park and I did lots of running around. Auntie Paulina came with her Son Lucaza and he had bought me a "Ben 10" comic book with a gun that fires rings and Lucaza me and Grandad took turns at firing it and chasing each other. Then the Lady from TVP came to interview me again to see how the scan had gone, but we won't have the report until Wednesday. Any way afterwards they gave me some presents from the TV Station. Thanks Violet. After that we all went on a walk around the Old City of Warsaw and Auntie Paulina showed us lots of nice places. Next morning we were up really early for the plane (3am) and we got home about 11am. I slept on the plane so by the time I got home I was full of beans again so Nana let me go to "Kids Club" and I told everyone about my trip to Poland. Grandad says that we will let everyone know in a few days time what the news is. Bye for now, Love You All. Connahxxxx PS We are asking the Clinic to send the video of Nana to the TV so watch out for her on "You've Been Framed"!
Posted on: 29/08/2008
We all returned from Poland very tired today. 3am start to catch the plane home. Connah slept all of the way and hn was fully "recharged" when we landed. Will update you all on our visit shortly. Love to You All Debbie, Jim & Connahxxxx
Posted on: 18/08/2008
Hello everyone. More rain! Last week I was in the Newspaper again, this time it was the Evening Leader for going to Poland. Well a Lady phone Grandad up asked if she could do an interview as she works for Polish TV (TVN24). so she came up on Friday and spent the weekend with us and Auntie Paulina, Uncle Clive and Luzkash. She did lots of vidoeing in the garden with Nana and Grandad and me and she took some "cool" photo's of me playing football with Grandad in the garden. Her name is Dominica and she came all the way from London to see me. You can't see it on tv unless you have a special dish but Dominica said it wil be on the internet in a few days time. I must go as its a busy day, I am off to kids club and then off to the liberay and off to dance class, so see you all soon. Love You All. Connahxxxxx
Posted on: 11/08/2008
Hello everybody. Well Grandad came home safely and we had a big cuddle. Next day we all went off to pick up the camper van. When we got there you won't believe it there was big posters of "Ben 10" in the window and John said that Ben had been and left me some presents inside, so I was really excited and inside was was loads of stuff from Ben, a Ben 10 blanket and new bag for school and a chair and some toys and loads of stuff (thanks John). Then we had to find out about all of the stuff inside the camper and how it works, so Grandad did that while I had some lunch. Then me and Grandad drove it back while Nana came back in the boring car!
At Kids Club we all went down to the beach and had really good fun making sandcastles and playing on the beach. Monty and Scoobie are almost being good, Monty has started to chew Nana's carpet and Scoobie keeps hiding in the garden! Yesterday we went for a drive out in the camper van and took Monty, he really liked and we had packed it out with loads of stuff so we could have our lunch and take Monty for a walk on the beach. If it would only stop raining we would have loads more fun. Dance class tonight. Love You All. Connahxxxx
PS. On the 3rd August it was 2 years since Connah was diagnosed with Neuroblastoma and started his treatment at Alder Hey Childrens Hospital. His prognosis was very poor. Thank you all for your support in word, thought and deed over the past 2 years as we could not be where we are today without you. Love Debbie, Jim & Connahxxxx
Posted on: 01/08/2008
Message from Jim. Good news, Connah's blood's report came back yesterday as normal and he is growing (even if it is only his feet!) but these are both good indicators. Dr Hessling has put the bruising down to "normal boys play". Thank you all for your support and keep those positive thoughts coming as we want to be able to report more good news at the begining of September. Love to you All. Debbie, Jim & Connahxxxx
Posted on: 31/07/2008
Posted on: 29/07/2008
Posted on: 20/07/2008
Hello everyone, Guess what I went to another smashing party on Friday. It was Leah's Birthday. She is from my Dance Class and we see each other every Monday when we go for our Dance practice with Gail. It was a good party, we must have had a "Goood Time" as when we got home Nana said that she was dizzy from everyone running round and deaf from all of the noise (shssss don't tell her but I think its really her age!). Thanks for inviting me Leah. On Saturday when it had stopped raining we went out to deliver some more of my Birthday Party invitations, but I got in big trouble when I got back as Auntie Carol & Uncle Terry had given me a "Monster in an Egg" the monster has to come out of the gooo and be washed off, but I was rushing to get out and didn't get all the gooo off and put it down on the carpet with my other toys when we went out. Well the carpet needed some colouring up so I don't see why Nana was so upset! But I did say that I was sorry and so will Auntie Carol be when Nana see's her again! Thats all for now. Love You All. Connahxxxxxx
Posted on: 19/07/2008
I have allowed people to post their comments on Connah's website over the last few days on the subjects of bullying, newspaper articles, school, Connah's treatment and Connah's Fund. This was to show that we have nothing to hide. I also said that anyone can phone or come to the house to discuss any of the above issues. No one has. I now am drawing a line by saying if anyone still wants to persue these issues please e-mail me directly at firstname.lastname@example.org and I will answer any questions that you have. I have asked my service provider to monitor all future messages and to remove any which are not appropriate for Connah's site.
I would ask all of the Connah's Appeal Commitee Members to meet at our house on Wednesday 6th Aug at 2pm.
Thank you to all our friends for your continued support.
Posted on: 17/07/2008
Posted on: 16/07/2008
Posted on: 15/07/2008
Hello everyone. What a weekend I have had. Grandad had to go back to work, but he will be home again soon. Then Auntie Carol & Uncle Terry came up from Dorset to stay with us. Auntie Linda and Chantelle came over from Rhyl to visit and Dan and me played in the garden with the new skateboard that Aunie Carol & Uncle Terry brought me. I only fell off once, Grandad said next time Auntie Carol has to demontrate how to use it, before she goes home! Anyway on Sunday we all went down to the beach and I took my fishing net that Nana had got me last week and we had great fun. Then in the evening it was the "Big Dance Show" in Rhyl, my very first show on the stage, I was really excited. Lots of people came to see me and thank you all for coming. It was really good and we hope to have some photo's soon to show you. At the end of the show I was asked to give a big bunch of flowers to the Lady Mayoress of Rhyl, but I walked off the wrong side of the stage, silly me and they had to send me back. There was no school on Monday as the teachers are on strike, but Auntie Jenny came and I did some work with her. I am looking forward to when Grandad comes home and then we can get out in the camper van, I bet it rains when he comes home, it always does. Bye for now. Love You All. Connahxxxx
Posted on: 12/07/2008
We apologies to any parents of the few children caught in Connah's school sports day photographs who were upset by us posting them on Connah's website. The Head of Gronant school brought to our attention that it was "inappropriate" for us to use pictures of Connah with other children at the school sports day so the photograph's have been removed. Our intent was only to show Connah living a normal life with his friends. Once again I apologies if this caused offence.
Posted on: 05/07/2008
Hello everyone. We had sports day at my school and it didn't rain this year! There was lots of races and an obsticle course and I came 2nd in one race and got lots of stickers for being good. We didn't have an egg 7 spoon race but we did have a "frog on a bat" race that I was good at till right near the end when I dropped it, "Oh Man"! Nana and Grandad came and they were shouting for me and everyone had a really good time. My Cousin Pheobe has been in hospital for an operation and has been really brave, well done Pheobe, Love You lots like "whirly tops".
Grandad and Nana have bought a camper van so that we can all go holidays and we can take our organic food with us, that will be good and we can take Monty and Scoobie with us and Grandad has even bought a bike so that we can go biking while Nana sits out in the sun and makes dinner! I am fine and everything is going okay. Love You All. Connahxxxx
Posted on: 29/06/2008
Hello everybody. Me, Nana and Grandad have just come back from Centerparc's Sherwood Forest and we had a "SMASHING" time, its was "Really Cool" and we had loads to do. It was a long way to go, so Monty had to stay in the "Dog Hotel" but Grandad put Scoobie's box in the back of the car and he came with us. We had a little bit of trouble finding it as Grandad's new "SATNAV" told him to turn right into a field! But we found it after a while and went and stayed in a big log cabin in the woods, as we were a bit late getting there we could not get our bikes (Nana & Grandad's I took my own Spiderman one) until next morning. So we did a bit of exploring and then went and had dinner. Next day we were up very early to get the bikes and then I went to "Football School". We had a trainer called Les and we did lots of different skill training and then we had a game of football.
Later Grandad and me went swimming while Nana wrote out some of the invitations for my Birthday Party. We had good fun and we went on loads of slides and even down the shoot in a rubber raft, then I showed Grandad how you can go outside swimming through a passage and I jumped over a ledge and down a shoot that was only for people who can swim without armbands, so Grandad had to follow me and try and get me and the man was blowing the whistle and telling us off. So we had to climb out, naughty us! But it was fun. Later we went for a bike ride with Nana down to play a game of Ten Pin Bowling, Grandad won this time. Then it was back to the log cabin for dinner and bed.
Next day we had to bike a long way to the "Lazer Combat Area" where we put on helmets and ran around shooting each other with lazer guns, guess who kept shooting Grandad in the back, even though he was on my team? It was good fun and had and we got very hot doing all of the running around and shooting. On the way back it was up a "Big" hill and Nana who was on a 3 wheeler bike helped me by giving me a pull up to the top. After lunch we went and did the "Rock Climbing", I didn't get all of the way to the top, but I had a good go, then we finished off the day with another game of bowling that Grandad whom again! Later we went int the "Kid's Disco" and I did lots of cool dancing and met two nice looking Sisters.
On Thursday it was back to Football School where we did more training and then had two games of football, one game I spent kicking the ball at the wrong goals, what a nit! Then we all did a penalty shootout and I scored 2 goals out of 3 shots. At the end Les said that we had all done really well and we all got a certificate. We had to ride quick then and get lunch as Grandad had us booked on the "Bike Treasure Hunt" and I got changed into my pirate clothes as there was treasure to be found. It was hard work and we had to bike to 10 place's and find differnet clues. We weren't last, but we were close as Grandad sent us the wrong way and Nana got cross as there was lots of hills to ride up. At the end I got a gold badge as treasure for getting all of the numbers right.. Later we had a bath and got changed and went to the "Robin Hood Banquaet" and Robin Hood & his Merry men come on the stage and do a story while we have a big dinner, they even do sword fighting with the Sherriff and then Robin marries Marian and at the end we all have our photo taken. I was in my Robin Hood outfit with my bow. On the way back to the cabin I stood on the back of Nana's three wheeler and held onto her shoulders while she "puffed" up the hill to get us home as it was late at night.
Next morning we were all up early to pack and hand our bikes back ready for the trip home. At breakfast time we were having lots of animals come to the back door for food. We had some squirrels and rabbits and ducks and a hedge hog and on the very last morning a big Swan came and Nana fed him some bread. Oh we also met Steve and Mat from Prestatyn and Mat goes to the school where I go to "Dance Class". On the way home we calledin to see Great Grandma in Glossop and had tea and cake and then we went and saw Auntie Sue at work and later we went to see Aunie Ellen and Uncle Adrian and Ryan, I missed Pheobe as she was having a sleep over at her friends house, but she left me a present and I took her one from Centerparc's. We had a Great time there and met loads of people and I hope I can go again sometime. We were all very tired when we got home so we could not get Monty from the "Dog Hotel" until the next day, he was really pleased to see us and we all were home again together. Hope that you can go to Centerparc's and have as much fun as I did! Love You All. Connahxxxxxx
PS When I got home I had a present waiting for me, it was a book from Linda's (Aberdeen Mall) Brother, Jac. Its called "Move over Rover" and its all about Danny and his dog Rover. Also Jac wrote me a message in the front of the book and in the back. Thank you Jac & Linda. Grandad read me the story before I went to be on our first night home xxxxx
Posted on: 16/06/2008
Hello everyone, I went for my check up today and the Doctor says that I am fine. I have grown 1cm since my last visit 3 months ago and put on .5 kilo and that puts me exactly right on the height / weight scale for my age. The Doctor also told Nana that I should go back to school for longer, rather than just my half day, but we are having a bit of trouble with school on that so perhaps it will be sorted out soon and I can spend more time with my friends. I got a smashing new book from Auntie Sylvia & Uncle Nils today, she remembered that I like "Pirates" and sent me a book with magnetic pirates, cool! Also I was at dance class tonight and Gale told us all well done from Saturday and that our group got 31 points out of 50 and we did very well. Also we learned some new moves tonight and I have to practice at home before the show in July. I was impressing the Doctor wit my dancing today and a little girl called Mia who I met. Thats all for now. Love You All. Connahxxxxxx
Posted on: 14/06/2008
Hello everybody, school has been going well this week and I have read some new books and I got a merit mark and two house points and two stars for working so hard, how cool is that! Grandad got home safely on Tuesday night and we had a "Big Cuddle" I am glad he is home. Nana has been working hard in the garden and I have been messing around in it. Nana & Grandad had to go to a big meeting at school about me going in for longer during the day, they are still talking about it as I have to have a letter frem the Doctor. Auntie Jenny was here in the week and we did lots of hard work and some sum's too. We had to go shopping and get some dance pants and pumps for the compition on Saturday, but we couldn't find an orange tee-shirt so I had to have white instead. My friend Jack has been in hospital as he was not feeling well but he came home on Friday. Monty had to go into the vets and have an operation as he was having a bit of trouble but he is better now. But today was the big day, we went early to the Nova in Prestatyn as they were holding a big dance compition so we went and watched all the other teams and there were some really good dancers and then the team that I am with did our dance and we were realy good too but we didn't win a prize this time, thank you Gail for teaching us. Then I went to see Nicola and have my hair cut and I showed her some of my dance routine and she put some gel (quick drying this time) on my hair and I look all spikie! Its been a long day so I'm now off to bed and give Nana & Grandad a bit of a rest. Night night, Love You All. Connahxxxxx
PS Lynda Grandad says if there is anything that Nana & Grandad can do for your friends Daughter Emma please e-mail him through the website xxx
Posted on: 08/06/2008
Posted on: 02/06/2008
Posted on: 31/05/2008
Posted on: 28/05/2008
Hello everybody. I had another wobbly tooth the other day and I played with it for ages and it finally came out, but guess what, the Tooth Fairy didn't come when I put it under my pillow, Nana said I should let them come out on there own in future. School holidays have been good this week, but we have not been able to get out in the garden much because of the weather. Yesterday we went to the hospital for my hearing check up and my hearing is still the same which is good, but I am getting some new hearing aids as I have had these now for 10 months. But no tv last night as I was showing off in the hospital and Nana got upset with me. Thanks to Nicola and the girls at the hairdressers, they are all going to come to my Birthday Party in Novemebr, I keep asking Nana "How long is it to my Birthday Nana"? If I keep asking her she might bring it forward a few months! Thats it for now, Love You All. Connahxxxxx
PS Auntie Sylvia is going in hospital this Sunday so be brave Auntie Sylvia and don't start jumping around off the chairs or Uncle Nils won't let you have tv when you go home, just like me!
Posted on: 24/05/2008
Hello everybody. I have been doing good work all week for Auntie Jenny, but last weekend I was in trouble at Auntie Ellen's. I kept throwing Hector's toy in the house and he was in trouble for going and getting it (Auntie Ellen's dog) so I got in trouble too, so Nana said no tv for 2 nights!!!! But it was okay I got a big hug from Cousin Pheobe before I left.
My over front tooth fell out, so now I have no front teeth, Nana says that I sound very funny, I don't know why! But I got a pound from the "Tooth Fairy" so it was okay. We had a picnic at school as the weather has been really good, so I took all my Organic stuff to eat and had a smashing time and played lots of games on the school field. Then I went home and played football in the garden with Dad so I was really tired at bed time. We have a holiday from school now so that is good and my friend Dan is coming round to play today then I am going to see Nicola and the Girls for a hair cut. Thanks Nicola for sponsoring us for the walk in Scotland. Love You All. Connahxxxx
PS Jennifer thank you for your message, Grandad has been to Canada lots of times and says that it is really nice, but it gets very cold. We have relations in Bridgend!
Posted on: 18/05/2008
Hello everybody. School was good this week and I had lots of fun with my friends in "Kids Club" too. This Saturday we went bowling at the Ffrith Beach Fun Centre, it was good and guess who was the best "again", yes it was me. After that Nana took me to look at some "camping stuff" as she said that Grandad might take us all camping when he is home during the Summer. That sounds Great and I will ask one of my friends to come and we can have a camp fire and all sorts of stuff. I have been good for Nana and I have been making my own bed and putting the mats away off the table after dinner and doing my reading. I also lost another tooth last week, that is 4 now, but I have not had any new ones come through yet. Must go as its time to take Monty for a walk, we are still practicing for Nana's "Race for Life" walk in June and we have to get better to beat our last time! Love You All. Connahxxxx
Posted on: 09/05/2008
Hello everybody. We have had lots of time out in the garden. Nana has been doing lots of mowing and Grandad has been doing strimming and gutters and I have been playing football with Monty and Scoobie has been out in the grass trying to escape, he is really hard to find if you don't watch him.
At school we have had stories outside and I had a spelling test and did well. Auntie Jenny has been and I have done good reading. I have had lots of messages on my site, thanks everyone. At weekend we are going to Rhyl to see a show "The King & I" Some of the boys and girls from the Dance Club are in it and we want to see them. I want to be in a show soon! Guess what, after all that sunshine it is raining, "oh man"! Bye for now, Love You All. Connahxxxx
Posted on: 02/05/2008
Hello everybody. I have been having loads of fun lately and a lot of rushing around, but I'm not tired, not like Nana & Grandad. We still have lots of photo's to put on my site so keep watching out for them. Well when we drove back from Scotland it rained all of the way from the border into Wales so that was not much fun. I don't think that you miss all of that rain Auntie Jan, bet you have loads of sunshine in America! Any way we got back late and next morning we had to be up early again as we were going to the airport and guess who didn't want to get up? No not Nana it was me, so we were late leaving for the airport and them there was a problem on the road so we were very late getting to the airport and we had to run all of the way to the plane and everyone else was onboard! Still the flight was good and we looking at Auntie Sylvia's Pirate book all of the way to Paris. We then had to wait for another plane so we went and had some lunch. Oh I forgot, Nana kept getting stopped by some men as she had put my organic drinks in her back and they wouldn't let her take them on the plane. That is silly not letting you take organic on the plane, so I had to drink it quick!
We were sat waiting for the next plane and Grandad went to the shop and bought me "High School Musical Concert" DVD which is great so I could see it when we got to the hotel, I like the songs. We were watching the screen for getting on the next plane and Grandad saw a sign saying that "Boarding was now closed" on our flight, he was mad as they had not even said "get on" so he made Me and Nana run all the way down to the gate, we even just ran through the security men (but they stopped Nana, again!). Well when we got to the gate the man said that it was a mistake on the tv and no one was even on the plane yet! Nana was really cross, with Grandad!!!! We got on the next plane and flew over some big mountains covered in snow, but when we got off it was lovely and sunny. When we got to the hotel we all went out and had some dinner at an Italian resteraunt and I ate all my spaghetti! We had to be up early next morning so we all went straight to bed. Next morning it was sunny again and we wen and met some new friends: Erika, George, Brigitta and George again. They were very nice and looked after us all morning, Erika even took me outside to a little park while Nana & Grandad talked to George. In the afternoon we said goodby to them and as I had been a good boy we went off to the park and had a great time playing on a giant slide and in a fort with some other boys and girls and on the way back to the hotel we saw some "red hot trainers" in a shop so Nana & Grandad got them for me, they will really help me run faster, watch out Grandad I'll be faster than you next time!
Next morning it was off back to the plane for the trip home and we got back to Wales in the evening. We just curled up on the settee and watched Jurassic Park II and then we all went to bed, all our adventures were over for a while, but someone was still missing! Monty came home next day and Grandad bought him to school to pick me up I was so pleased to see him we were playing all through the house and then he came and sat on my lap while I watched some tv. Grandad will try and put some more pictures on tonight. Thank you to everyone who put messages on my site while I was away and thank you to everyone who supported our walk. Love You All. Connahxxxxxx
Posted on: 01/05/2008
Its Grandad just giving you all a quick catch up over what has been happening this last week. Last Thursday we put Monty in the kennals for his holiday and Scoobie went off to Billy & Heathers for his outting. We packed up the car and on Friday morning set off for Ellon in Aberdeenshire Scotland. It was a long drive up, about 8 hours with Connah asking the usual "when will we be there" every 10 minutes. We finally arrived at about 7.30pm at Sylvia & Nils house. After dinner we were all ready for bed, except for Connah who sat up reading the new Pirate book that Auntie Sylvia had given him, eventually he went off to sleep.
Next morning we were all up bright and early and into our walking/running gear. Nils went off to Aberdeen to pick up Scott (The Trinity Mall Monster). We all set off for Balmoral where the race was being held. The country side was lovely on the drive, however Connah is not a "countryside person" so had to be entertained with "eye spy" songs and his favourite music on the CD. The event was very well organised and attended, even though we arrived early at 10am we were directed to the furthest carpark away from the event. So we had about a 2km walk before we had even started, which was hardest for Scott as he was carrying the Monster in a huge sack.
So we eventually arrived at the start, which was very well laid out in avery scenic vally close to the castle. There were a number of stands sat up and Connah rushed straight over to the "Fire Brigade" stand to see Scotish Mr WelliPhant & Mrs Bear, whom he entertained doing cartwheels and running around laughing and telling them all about his friends down in the Prestatyn Fire Brigade. The weather was very temprimental, one minute glourious sunshine the next roaring winds, black skies and rain. Anyway Scott went off to transform himself and we all had a quick drink before the start of the 5km walk. Scott came back as "The Mall Monster" surrounded by children all having their photo's taken. The idea was that Uncle Nils & Auntie Sylvia would walk round with "The Mall Monster" to give encouragement and drinks to keep him going. Connah & Debbie would just have their photo's taken at the start and then walk a little way and then drop out. Well anyone that knows Connah would guess that this plan was doomed to failure. So about 700 people set off to complete the 5km run/walk with Nils, Sylvia and the Mall Monster at the back, Debbie and Connah started off with them and when it came time to drop out Connah would not stop, so Debbie quickly spoke to one of the officials who allowed them to go on. However as this was not planned Debbie was still wearing rain coat, body warmer, rucksack etc, whilst Connah just threw his vest off over the fence as he ran past me to catch up with the Monster!
As you can imagine the walk was not on level ground and soon they all had a couple of small hills to climb, Scot did an excellent job. Connah was soon slowed down until he found a big enough tree to hide behide so that he could relieve himself, then he was skipping along and laughing and enjoying the sunshine that had come out. I met up with them at about the 3km mark where the course passed close by the start point and was able to relieve Debbie of her bag, coat and body warmer and take a few pictures. They all finished marvalously in just over 1 hour. Connah even received a medal and a tee-shirt. Well done to them all especailly Scott who went round as the Monster and raised almost £500 for Connah's Appeal. Nils, Sylvia & Debbie did an excellent job of keeping the Monster refreshed and Sylvia & Nils also raised over £300 for Connah. But the biggest Well done has to be to Connah who walked round the 5km's without a single complaint and would have been in under an hour if he not spent so long behind the tree! We are so proud of our Grandson! After receiving his medal the first thing he did was to run over to Mr Welliphant to show him and do an extra couple of cartwheels just to show that he was not tired out by the walk.
After that it was just an hours wait until I had to run my 10kms. Other than a huge hill in the middle of the run and a lot of huffing and puffing I completed it in a reasonable 52 minutes. Thank you to everyone who sponsored me. Shortly after the race we walked the 2kms back to the car and had a lovely scenic drive back to Ellon in glorious sunshine. Next morning, with a few aches and pains (Debbie and I not Connah) we set off back to Wales. We would like to thank Sylvia & Nils for looking after us. Scott for his remarkable effort and everyone who supported Connah who is going to complete the "Run for Life" with Nana and he says that he will beat Grandads time of 52 minutes, so "Big Wee" before he sets off. Love You All, Debbie, Jim and Connahxxxx
Posted on: 23/04/2008
Hello everyone. I have been working really hard all week and I got a Merit Award at school for my reading plus 2 special stickers for doing sums with Auntie Jenny. Auntie Emma has been to see me and so has Auntie Jean. I even had time for football in the garden with Daddy and Monty. But we have a busy time this weekend, we are off to Scotland to see Auntie Sylvia and Uncle Nils. They are both going to walk 5kms for my Appeal and Grandad is going to run 10kms around Balmoral Castle. We are then going to drive back on Sunday night and we would like everyone who Loves me and wants to help me get more better to send me positive healing thoughts on Monday night at 21.30hrs (9.30pm) UK time. I should be fast asleep by then and it will help me wake up full of energy on Tuesday morning.
Monty and Scoobie will have to go on their holidays too whilst we are away so I hope they have a good time. Grandad and me went and had our hair cut with Nicola and the girls, but Nana wouldn't let me have any coloured gel on this time! Any way I will let you all know how we got on when we get home. Don't forget Monday night please. Love you All. Connahxxxxx
Posted on: 18/04/2008
Hello everybody. I am fine and Grandad is home so I am really, really Happy. I am working hard at school and doing some very good reading. Auntie Jenny said that I should get a certificate for my reading, how good is that! We have a project at school on "At the Beach" Nana gave me some old photo's to take in, even one of My Great Great Grandma Broom at beach at Southport, plus a big Conch shell that Nana & Grandad & My Dad got from the beach in Oman when he was in the Army a long time ago.
Dance class is going well and we are going to see a show "The King & I". Some of the Boys & Girls from Dance Class are in it. Perhaps I will be in a show soon! Last night I went bowling in Prestatyn with my friend Danial from school. I was good but Grandad beat me, just! Auntie Carol up in Scotland did a picture for me and auctioned it off and raised £150.00, thank you Auntie Carol and thank you very much to the Lady that bought it. Thank you very much also to everyone that is sponsoring Grandad for his run next week, especially Karla & Eric in Dubia and Joanne in Manchester. Must go as Auntie Jenny is here to do more school work, Oh Man! Love You All. Connahxxxxx
(Connah's Grandad) A few days ago we wrote about Samantha Hugh's who had relapsed and was not very well. Unfortunately Samantha died a few days ago. When this illness comes back it works very rapidly and a lot of the time there is no way to stop it. We often read Samantha's website and she was a lovely little girl her Parents worked hard to see that she did everything she could to have a good life. God Bless You
Posted on: 10/04/2008
Hello everyone. Well its been back to school this week so I have seen all of my friends again. Grandad says that I am a "a am a nit" as I fell over in the playgound and cut my elbow and my knee. But I was okay, well I was okay "after it stopped bleeding". Anyway school is going fine and on Monday night I went to Dance Class and learned some new moves to show Grandad when he gets home, only 5 more sleeps, Yipeeee! He is in trouble with Auntie Jenny though, he bought me a new jigsaw to do, its "Power Rangers" which is good but its in the shape of a ball and Auntie Jenyy and me spent half an hour trying to do it and got nowhere, so Auntie Jenny said "wait till your Grandad comes home"! So he is in for it hehehe. Monty is being good, except when I pull his tale and then he chases me all round the house. Nana is over her aches and pains and has started training for her walk in the "Race for Life" in June. Any way must go and do some reading, bye for now. Love You All. Connahxxxxx Please take a moment to send specail thoughts to Smantha Hughs as she is not very well at all.
Posted on: 06/04/2008
Hello everybody. I was a bit tired from all my adventures when I came back from Centerparc's so I had to have a little rest. So after watching "Dinasaur Kingdom" for 10 minutes I was back to my usual self chasing Monty round the house and driving Nana nuts. I went to "Kids Club" for a few days last week as its still the school holidays and had a good time with some of my friends from school. On Friday I received a smashing parcel from Aunty Joanne in Manchester it was a box with some smashing books in all about the "Gruffulo", I like the one about the mouse who tricks the Gruffalo into thinking that everyone is scared of him. Any way thank you very much to Aunty Joanne and her Family for sending me this smashing present. Grandad can read them to me when he gets homexxx. Grandad is training hard at the moment as he is going to run in a 10km race up in Scotland when he gets home. So if anyone would like to sponsor him he says that he can do it in under 1 hour (he is getting on now) please send him an e-mail through my website. He is up to 7km at the moment! So this weekend I went with Daddy to the Ffrith Beach play center again and had a couple of hours running round. While I did this Nana went shopping and while she was in Marks in Rhyl she saw some tee-shirts that are from Dr. Who and when you press them they say "I am a Dalek" and make the sound of the Tardis, they are really cool. Did you see I had a messege from Chantelle's Sister Giselle (She is HOT) we did lots of dancing at the disco at Centerparc's and I think she likes me, lots!! Thats it for now, back to school on Monday! Love You All. Connahxxxx
Posted on: 31/03/2008
Hello everybody. I am starting to get over all my bruises from Centerparc's, Grandad says "Thats what happens when you play hard, and fall off your bike!". I really did have a smashing time and the pictures will be on as soon as Grandad gets home. I met some new friends and would like to say thank you to Phoebe, Chantelle, Jack and Charlie for helping me and looking after me and having a good time playing. I am really tired now I am home (but Nana is even more tired than me). Its back to normal routine today but no school for another week. Nana says that she will take me to the Ffrith Beach to burn off some energy at the play center. Thats all for now. Love You All. Connah.
PS Jack Nana says that she has another Robin Hood hat for Charlie so if you e-mail Grandad your address she will send it.
Posted on: 28/03/2008
Hello everybody. I have not stopped at all since being here. Yesterday I did more rock climbing, quad biking, swimming and biking, this time I didn't fall off going down the big hill. But Cousin Phoebe had to go home, I miss her. Hope your wrists feel better soon Phoebe and thanks for coming we had a "Brill" time. Next time when I come with Grandad he said he will take me on the "Laser Shooting" thats running around shooting each other and hiding, Nana's a girl so she didn't want to do that!!! Its back home tomorrow and we then go and bring Monty and Scoobie back from their holidays, I hope that they have had as much fun as I have. Thanks again to Nicola's Fund for sending me here. Love You All. Connahxxxx
PS Keep training hard Ben, Grandad says you will need it for the Army.
Posted on: 26/03/2008
Hello everybody. I am having such a good time here at Centerparc's. We all have bikes and ride everywhere, even Nana! We went swimming yesterday and it was great, I even swam without arm bands on and didn't sink, that was good and we did ten pin bowling and I won, but the lane has a few dents in it now as I kept dropping the ball instead of rolling it! Also I lost a tooth while I was eatting and I swallowed it and I was really upset as I didn't think that the Tooth Fairy would leave me anything, I did keep looking for it but couldn't see it, yuk!!! But when I woke up in the morning she had left me a whole pound coin! Nana said that she must have seen me smiling when I was asleep and noticed that I had a gap in my teeth, she has good eyes in the dark that Tooth Fairy! Must go I am shooting arrows with Robin Hood in 10 minutes and we have to ride there on our bikes. Nana told Grandad that she will need another holiday to get over this one, he said "Thats okay we can all go to Centerparc's in Penrith" That will be Great! Love You All. Connahxxxxxxxx
Posted on: 22/03/2008
Hello everyone. I started packing my bag for Centerparcs yesterday, in went my swiming trunks and my arm bands and my goggles and my Manchester City shirt and pants and that was me all ready to go for Monday! But I think Nana my want to put in a few more things, but I couldn't think of anything else unless its a few Ben 10 toys. Chantelle and her Mum Linda visted yesterday and we had great fun and Monty had a good time runnning around too. I showed off some of my "Cool Dude" disco dancing stuff and Nana made cake and sandwhiches, don't worry its fresh Organic bread and Organic cake and we are taking all our food with us. Nana says that Monty can't come with us so he has to go and stay with some "doggie" friends down the road. I am really looking forward to having a good time at Centerparcs and thanks very much to Nicola's Fund for arranging everything, I hope that we have some good pictures to show you all when we come back. Have a good Easter Holiday everyone and keep warm! Love You All. Connahxxxx
Posted on: 17/03/2008
Hello everybody. I had the day off school today to go with Nana & Grandad to visit the Consultant and have a ultrasound scan done. That jelly is very cold on your belly, the Dr. had a good look all round my tummy and he said that nothing was growing and some of the tumours had calcification and some had no blood going into them. He didn't look at the ones in my neck or under my arms, that will be next time. Then we went through to see Dr. Bernadette, she had a feell around my neck and my stomach and you know what she said? She said that I was getting a FAT belly! I don't believe it with all of the running around that I do. Any way she said that things are fine and she will see me again in the middle of June. So that is some good news, yipeee.
Also guess who is in trouble? Nicola & me. I went for my hair cut on Saturday and Nicola put all green and red gel on my hair as Wales was playing (and they won). Well I leaned back on Daddies white jacket and got it all red & green, then I went home and dived on the settee and put my head on Nana's best cushion and made it all red & green and then I put my hands on my head and then put my hands on my white pants, so Nicola is in for "Blue Blisters" off Nana (hahahaha). Tahts all for now. Love You All. Connah
Posted on: 15/03/2008
Hello everybody. Nana and Grandad went to see Dr Jessop a couple of days ago to have the tickets drawn for the Big Easter Egg. It was won by Andy Cartwright from the place where they make the aeroplanes at Broughton. There were lots of other prizes and Nana has phoned up all of the winners and told them and there prizes will soon be in the post. Tomorrow I have a Big job, I have to wee in a big jug from 24 hours, well not all of the time. This is to take to the hospital on Monday when I go to have my check up. They will check the VMA and tell Nana and Grandad how things are, but we feel that things are going very good. Nana said that they will also be having a look inside me with an "Ultrasound" machine to see how my lumps are doing.
Yesterday I was getting a lot of cuddles from Nana and Grandad and Daddy, I do anyway but these were extra ones! Today I am off to the play zone in Prestatyn and then I am going with Grandad to see Nicola and have my hair cut, I might even have zig zags again. Monty is still not being too good he keeps getting too excited when we are playing and then makes a mess on the floor so Nana gets really upset with him! Any way must get back to my breakfast as we went to bed really really late last night. Love You All. Connah.
PS. (Grandad) We heard yesterday that a little boy called Callum who was in Alder Hey with Connah when they were both having Chemotherapy had died during his bone marrow transplant. We know that its not just the illness that is the killer, the treatment at times is so severe that it can also have fatel effects on these young bodies. Our thoughts go out out to Callums Parents and Family.
Posted on: 14/03/2008
Message from Grandad.
As many of you know there are lots of other children out there suffering with the same illness as Connah. One of them is Jack Brown. His family are over in America at the moment having treatment for Jack. I have taken a clip from Jacks site which tells about 50 Police Officers who are going over to New York to raise funds for Jacks treatment.
(Many of you who follow Jack's story could help us now. On 2nd May 2008, approximately 50 Police officers from London will fly to New York and will run over a two day period to try and help us raise funds for research at Vermont. We are still working on the www.j-a-c-k.org website, but hope by next week it will be effective with an online donation system. We need your help to help us publicise the event and help us raise funds for this vital research. Help us put up flyers, send out press releases, send emails to your contact lists at work and at home, just help us spread the news... You could help us save the lives of hundreds of children. A cure is within reach, but lack of money bars the way)...
If anyone can assist in publicising this event to help Jack please do. Connah and Jack have not met but we are in contact with his family on the phone and through e-mails and we keep up todate on what is happening in America for Connahs future treatment. Thank you. Debbie, Jim & Connah
Posted on: 11/03/2008
Hello everyone. Well I had another smashing time at Dance Class last night, I was doing my impression of "Cool Dude", Grandad will have to take some more pictures so that you can see how good I am. Auntie Jean came today for my Healing Hands and then it was off to school. A Lady came to check my hearing aids today at school and while she was chatting with Nana the fire alarm went off and we all had to get out of the building and guess who forgot his coat, thats right it was me, what a nit Grandad said! Then tonight when I came home from kids club I had to show Nana my poorly toe, I had dropped a wooden brick on it and it has all turned purple at the end. Thats it for today. Night night everyone. Love You All. Connahxxxxx
PS Cousin Phoebe had to go to the hospital today, but she was very brave, just like me, Chin up Pheobe's. Hope that you saw lots of nice houses in Atlanta Auntie Jan, perhaps we can have a BBQ when we come over, but I don't think they will let monty on the plane, so we will have to show him a picture of Jacob when we come back.
Posted on: 10/03/2008
Hello everyone. Well I'm over my little bug now so no more being sick, but stil not eatting the same yet. Yesterday me and Dad went to the new indoor play centre at Ffrith Beach. I had a smashing time running round for 2 hours, jumping and climbing and making some new friends. Nana and Grandad were busy selling raffle tickets for the Big Easter Egg draw which is tomorrow. Then me and Dad took Monty out for a walk in the woods and we got a bit muddy, oh well! Today we went up to Glossop to visit Great Granma, it was a long way and Monty came in the car, he was fairly good and Great Granma was pleased to see us, she gave me a little tiger from Peru to put near my bed to keep me safe at night. Then we went off to see Auntie Ellen, Uncle Adrian and Pheobe. Monty went to see Hector. We all had a smashing time and a lovely dinner. Monty and Hector chased each other all around the house and Pheobe showed me her "Pokeman" card collection. We had to leave early as Grandad thought that the weather might get bad because there is a storm coming. I have some new pictures which Grandad will put on the site tomorrow as its a bit late now. Night night everyone. Love You All. Connahxxxxx
Posted on: 07/03/2008
Hello everyone. Me and Grandad are in trouble again! Grandad's not been well and he has this cough that gets worse in the night and the other night he was keeping Nana awake with it and she told him to "Put a Sock in it"! Then last night when I was having my bath I felt really sick and the next minute I was sick loads all in my bath (Grandad got his hand in and cleaned out the blockage, yuk!!!!). Then I kept Nana up ALL Night till 5am being sick. They were worried as I could not even drink water without being sick. Any way I seem to be a bit better this morning and I'm having little drinks and trying a little bit of breakfast too. So no school today and its "Toy Day" just my luck. Auntie Rhian (CLIC Nurse) came this morning and she is really surprised at how I have grown. Talk to you all later. Love Connahxxxxxxx (PS We think that its a bug going round the school, so not related to Connah's condition).
Posted on: 04/03/2008
Hello everybody. Sorry it has been a while since my last update, but Grandad has been really ill with a flu bug and is still not too well and he does not like me to mess with his computer while he is not there, maybe in a couple of more years I will do it on my own. Any way Nana and me are fine, we did not catch the bugs! School has been going well and I have got through lots of reading books. I went to Dance club last night for the 3rd time and had a smashing time with Gail & Tara but I still have not been in the show yet! Nana is doing a good job of selling lots of Easter Egg Raffle tickets and so are all of the people helping her, including Auntie Sylvia, Auntie Carol, Keith from Aerospace, Steve next door and lots more people.
Monty is behaveing himself and has not had a bath this week as its too cold. He did have a chew on Nana's new slippers which I got her for Nana's Special Day last Sunday but she let him off. Nana was talking to her Auntie Gwen who lives in America the other night and she lives in North West Georgia just above Chattenooga so that is where we hope to go and visit them possibly in the Summer Holidays. We might see Capt Wil Cox when we go over on the plane again. I wil make sure that I am wearing my Capts Wings so that they know I can fly the plane too!
Did you see that I got a message from Sparky the Fire Dragon, how cool is that! Thanks everyone who has been leaving messages for me and sites for me to visit. We might be taking Monty up to see Cousin Pheobe on Sunday and if Grandad is well we will go and vist his Mum, My Great Grandma who lives in Glossop, hope it doesn't snow though.
Thats all the news for now, I am full of energy and still running Nana and Grandad ragged, but thats what little boys do, isn't it? Love You All. Connahxxxxxx
Posted on: 23/02/2008
Hello everyone. We have had a busy week. Grandad came home on Tuesday night from work and we all had Birthday cake, there was not enough room for all his candles though so we just had candle numbers! I had to go to the Doctors as I had a rash, the Doctor thinks that it was just with the oil that we use in the bath for mu machine so we have stopped for a couple of days to let it clear up. We had a great time yesterday as Monty needed a bath, so we got the big bucket out of the garden and he went for a swim! He was a good boy really and he got a treat afterwards. Today we took him down to Presatyn for a walk up the high street. Everyone was stopping and saying "What a Lovely little dog" he is a real "babe magnet" and lots of girls were coming up! I have had loads of nice messages on my site especailly since Benn did my video on YouTube, it is FAB!
Nana has been really busy going round selling raffle tickets for that Huge 4.5kg Easter Egg, someone will really enjoy Easter when they win that! I was at the Barbers today and the girls put wavey lines in my hair and then they put green and red jell in my hair as Wales was playing rugby today and they won yipeeee! Aunty Jean is coming to see me tomorrow for some more healing so I had best get off to bed. Love You All. Connahxxxx
Posted on: 16/02/2008
Hello everyone. Guess what, I've been good again (well most of the time really). I did a nice picture for Grandads Birthday Card and then I drew a nice picture with a flower on for Nana as she was not feeling very well. I have been taking Monty for walks and helping Nana around the house. So today a present arrived from Grandad for me being a good boy, it was a new "Ben 10" quilt cover a nd pillow case, how cool is that. Nana didn't know that it was coming so she had only just changed the bedding, so I will help her change it again tomorrow.
I had another surprise as well, the mail came while I was eatting my cornflakes and there was a letter for me. When I opened it it was a valentines card from Aunti Carol in Scotland and guess what it was all full of little hearts and they all fell in my breakfast! I thought it was funny. Nana was busy today, while I was in Kids Club she was out selling raffle tickets for the "BIG Easter Egg" Raffle. Nana made me some "Green Tea" the other day and she put some apple juice in as she thought that I might not like the taste. Well she was wrong I really did like it and I drank the whole litre in two goes and geuss what else if you drink the whole litre in two goes it really really makes you go to the toilet afterwards, a lot! Thats all for now, only 3 more sleeps till Grandad comes home, yippee! Love You All. Connahxxxxxx
Posted on: 15/02/2008
Hello everyone. I went to the hospital on Wednesday for my checkup and the Doctor said that everything is fine. I have grown a bit more but lost a bit of weight, that is probably due to Nana taking me off my favourite "mash potatoe" and putting me on brown rice, which is okay. Anyway I went down to see the nurses on "Rupert" Ward where I used to saty sometimes and they were all very pleased to see me and Auntie Rhian was there as well, so we had big hugs and everyone was saying how well I am looking.
Thanks for all your messages and big Valentines kisses to all the girls. Especially the ones who sent me cards yesterdayXXXXX. I have learnt a story for Grandad when he comes home, it is "Three Little Pigs" and I am going to read it all to him for his Birthday Present next week when he gets home. Did everyone see the new "Ben 10" movie on tv on Monday? It was really cool and its on again tonight if you missed it. Thats all for now. Love You All. Connahxxxxxx
Posted on: 10/02/2008
Hello everyone. Hope you all had a good Saturday like I did! Dad took Monty and me for a really long walk, we went down to the park and had good fun. Monty didn't like the roundabout too much but he was okay on the seesaw. Some boys had some electric cars and were racing them, but we only watched from a distance as Monty didn't like the noise of the engines. When we got home we had lunch and then played football outside. Dad's not as good as me as I support "City" and he supports "Spurs"! After we had a rest we went and played Super Mario Olympics on the Wii and had even more exercise so tonight I will sleep really good after all this playing. Good to hear from you Will, hope that your Dad is okay flying those big planes as it has been a bit windy lately. Grandad will be home from Yemen soon but I don't think your Dad fly's there! We may see him when we go to Atlanta later in the year though. Night everyone from a very tired Connah. Love You Allxxxxxxx
PS Hi Chantelle, really look forward to our break together that Auntie Rhian has organised. You will be able to meet my Cousin Pheobe she is really cool and goes to Centre Parks a lot so she will know all of the best stuff to doxx
Posted on: 05/02/2008
Hello everyone. Did I have a good time at Dance Class last night or what! It was Great and I had a smashing time. There were lots of other boys and girls there, well not too many boys but enough. "Sam" was showing me different steps to do and I was picking it up and the Lady who runs it "Gail" said that I had potential and could come again, but she told Nana that its not all just fun, you have to learn stuff and take tests and exams, but that doesn't bother me as I am good at reading and I got a new book yesterday from school. Anway I will be going back again after the break in two weeks time, so perhaps Grandad will be home to take me then! Everyone have a good day like me. Love You All. Connahxxxxxx
Posted on: 02/02/2008
Hello everyone. I'm all excited and can't wait till Monday come around, I'm going to "Dance Class". Remember last year I went and saw some other boys and girls in Prestatyn and then they did a show in Rhyl to raise money for my appeal. Well every time I go and see a show I am up dancing in the aisle so Grandad wrote and asked the Lady who runs the classes if I could go for a trail and she said that she would love to have me there. So standby to see how it goes on Monday! Yesterday we had some snow and some hail stones that turned the ground white, so no walks for Monty he would have been really frightened! Good luck to Jan & Family in America when you move house, we are a lot closer to meeting you all now as we have relations in Georgia and Grandad says that we will be going over to see them this year, yipeeee! Everyone have a good weekend, can't wait for Monday to come around though! Love You All. Connahxxxxx PS Well done Pheobe for being really brave last week, once I have been to class we can do dancing together!
Posted on: 31/01/2008
Hello everyone. I'm still being good! I had another new reading book from school yesterday, after school Dad picked me up and when we got home we both took Monty for a big walk, all the way to the end of the driveway. Well he spent lots of time sniffing around in the grass at the scent of the squirrels and he wasn't too bad this time walking on the concrete so he is getting better. Nana says that all we have to do now is train him to let us know when he wants to go out, that might be a bit more difficult. After the walk I was soaking in sweat from all the chasing around in the garden so I had to have a bath and then we played a new game that Dad had got on the Wii with Sonic & Super Mario, it was really good. After dinner I did some reading out of my new book and then it was time for bed. Bye for now. Love You All. Connahxxxxx
Posted on: 28/01/2008
Hello everyone. Could you please take a moment to give a Prayer for George Yeomans and his Family. George lost his fight against Neuroblastoma last Friday. Connah and George almost met at UCL Hospital when Connah went down for his scans last July, but George had just left a couple of days before for treatment in America. Please send positive thoughts to help Georges Family get through this, the worst of all possible times. Thank you All. Debbie, Jim & Connahxxxxx
Posted on: 28/01/2008
Hello everybody. Hope that you all had a good weekend like me, even the weather wasn't too bad. Me and Dad were playing on the wii on Saturday (Star Wars Lego) I was the best with the light sabre. Grandad phoned while we were being attacked by Storm Troopers so I couldn't talk to him for long! We all went in the garden yesterday for a run around as there was no rain (for a change). So we let Monty out and he had a great time, even though he is small he is really fast, especially when you are trying to catch him. He doesn't like walking on the driveway though, his feet come to a complete stop when he touches it. I have a new reading book with more words than pictures, it is really hard, but I am doing well, Grandad says that I will soon be reading his books. Looking forward to going to Centre Parks with Phoebe at Easter time, thanks for setting it up Auntie Rhian, also Chantel and her Mum will be traveling with us (Alder Hey & Glan Clwyd hospital pals) so we should have a really good time. Thats it, have to be up early for school tomorrow. Glad to hear that you had a really good time at the panto Auntie Sylvia & Uncle Nils. Love You All. Connahxxxxxx PS Please give a prayer to Jacob Marsland who is in hospital and is very poorly at the moment.
Posted on: 24/01/2008
Hello everybody. Well guess what, Ive been really good. I did good reading for Auntie Jenny and got two new reading books from school and then went home and read one straight through for Nana and then I have been drinking water with no juice in, but guess who wasn't good? It was Monty, he had a wee on the settee when Auntie Rhian was here and then he was chewing one of Nana's cushions so she was not happy and he ended up with a red bottom. Nana said that was a good idea about ice pops in the sauna Joanne, she will try and make some up, but the idea of Nana with a guitar did not raise such a good response! Thanks for the calendar Pheobe's the pictures are smashing. Love you loads, like slimey toads (I'm a boy what do you expect)! I had my hair cut yesterday and the girls have cut it really, really short and spiked it up for me, I hope that I can get a picture of it so that you can all see, Nana says that I look lots more checky than normal. Thats it for now. Love You All. Connahxxxxxx
Posted on: 18/01/2008
Hello everyone. I have been in school all this week and had a good time, except for when I was in "after school kids club" and Brenda had to tell Kyle and me off for being naughty and running all around the furniture. I had a really nice letter from Cousin Pheobe, thanks Pheobe's hope school is going good for you too! I have been doing well with my reading and I went and saw a play after school with Nana. Things have not been going too good in the sauna though, it gets a bit hot after 15 minutes and I am getting a bit fed up after all these weeks, I do it to sweat out the bad toxins in my body but I really do get fed up with it (some encouragement needed please). Tomorrow I am going out with Nana & Grandad and hopefully one of my friends to a "jungle gym" where I can burn off some all this incredible energy that I have, Nana says that I can wear my new Ben 10 teeshirt that Joe got me for Christmas. Message for Jack, good luck with all the organics mate, I will be able to come round your house for tea sometime. Monty went to the vet this week and had his last injection and had a "chip" put in and guess what, he is as brave as me cause he didn't cry either. Must go and get to bed as its a busy day tomorrow. Love You All. Connahxxxxxx
Posted on: 13/01/2008
Hello everybody. Nana, Grandad and Me went to visit some of the people who do so much to raise funds for my appeal so we would just like to say Thank you to all of the Nursery's that sold tickets to Santa and for raising money for my appeal. Also thanks to Julie from D1 Hairdressers in Prestatyn for donating to my appeal. Plus a Big thank you to Joanne and Excel Securities who made a Terrific donation last year and who I sent a one of my paintings to (see photo's). I will also be sending one of my paintings up to The Mall in Aberdeen to those Lovely Ladies Linda & Morag who gave me a very special time with Santa. To Mel who jumped out of a plane for me and didn't scream (so she says) thanks very much. Plus thank you to Kerry and her Family, we would send you a painting but you probably have enough of your own and to all of the people who send in donations through "PayPal". There are lots more people to mention like Auntie Sylvia, Auntie Jean, Auntie Pat, Auntie Carol, Auntie Jan. Auntie Jenny and a specail thank you to Dave for providing this site and looking after it and to lots lots more. Just to say Thank you to Everyone who helps me. I Love You All. Connahxxxxxxx
Posted on: 12/01/2008
Hello everyone. I have been in school all week (afternoons) and been very busy. We have done lots of reading and I got 4 new reading books in one week. I rubbed a bit of skin off my foot at school so Nana & Grandad took me for some new shoes today. When we were in the shop (Clarks) Grandad saw that my shoes were diferent sizes. I had mixed one up with my friend Tommy at school and when we phoned his Mum Sarah she said he had two odd shoes as well, what a pair of "Narners"! We have had great fun playing with Monty and we have introduced him to Scoobie (Tortoise), Scoobie watches him from inside his shell and Monty has a good sniff round him.
Auntie Sylvia got her new bed this week and now she can cuddle up nice and warm on those cold Scotish nighs. Grandad was out this morning cleaningout all of the gutters on the only day it has not rained for ages, whilst me and Monty helped Nana around the house. I sent two letters this week, one to Farther Christmas saying "Thank You for all of the nice presents" and one to Sparky the Drangon (school book) saying please come and eat some of our grass as its too wet to cut. Thats it for now as its very late. Night night, Love You All. Connahxxxxx
Messages: Thanks Joanne for putting my picture up at work, watch out for your photo tomorrow. Love you loads too Phoebie and can't wait to see you. Elle you can come and play anytime. Nicola, we will see you next week for a hair cut! Auntie Carol, I hope that your eye gets better soon. Auntie Pat, glad to hear that you are better, Nana will give you a call next week. Emma, go for a puppy now they are too much fun to wait till your Birthday! Please all take a minute to think of George Yeomans he has the same illness as me and is not good at the moment. Love Connahx
Posted on: 07/01/2008
Hello everyone. Me and Monty were really scared last night with all of the high winds, but Grandad got up and closed the windows and gave Monty a cuddle till he was okay and then gave me a cuddle until I went back to sleep. Today I went to see a new Doctor, she was a very nice lady and her name was Dr. Bernadette. She gave me a checkup and then talked to Nana & Grandad whilst I played with a pirate ship and some figures from Shrek. She told them that I looked very well and to keep doing what they are doing and to brring me back every 3 months for a checkup. This means that I will be checked every 6 weeks, at Glan Clwyd by Dr. Hesseling and then 6 weeks later by Dr. Bernadette. They have different toys in there rooms to play with so that is good. Its back to school tomorrow and I can tell all of my friends about my Christmas presents and about Monty, yipee! Thats it, bed early tonight Nana said as we are up early in the morning. Night night everyone. Love You All. Connahxxxxx
Posted on: 06/01/2008
Hello Everybody. What a Smashing day we had today. I did some good school work and Monty sat in my lap whilst we had a story and I did my new Power Rangers jigsaw. Then after lunch we went to see Aladin at Rhyl Theater, it was really good and I came out with a sore throat after doing all the "Booing, He's behind You, Hissssss, Singing songs and Cheering" its was Great fun. Then we came home and Monty was naughty on the carpet, he must have been excited to see us back. But yesterday he was very good, he had a bath in a big yellow bucket and didn't cry and he slept right through the night and didn't wake Grandad up till nearly 7am! Nana said thats because she put a hot water bottle in his bed to keep him warm. We took all the Christmas lights down today as well so we have been really busy. Any way its time for bed and tonight Grandad is going to read me one of "Winnie the Witch" stories, last week it was "Wind in the Willows", which Auntie Sylvia & Uncle Nils sent me. Night night everyone. Love you All. Connahxxxxxxx
Posted on: 03/01/2008
Dear All. Thank you all so much for giving up your time and effort to support Connahs Appeal. Our total now stands at £54,383.80. We are now doing our Year End Books. Could we ask everyone who has contacted us and informed us that they have raised money for Connah's Appeal and not yet sent it in to please do so. We are looking forward to receiving approximately a further £5,000 towards Connah's Appeal from those of you who ran marathons, jumped out of airplanes, held parties and had fund raisers at work. Once again thank you all. Connah is at the moment in very good health as you can see from the pictures, We hope to be able to update everyone as to what is happening inside of him in the next few weeks.
Debbie, Jim, Chris, Connah & Montyxxxxxxx
Posted on: 31/12/2007
Hello Everybody. Just a message from Connah's Grandad at the end of a very dramatic year to say thank you to everyone who has contacted us, supported us, helped us and taken the time to give a special prayer for Connah over the last 12 months. Yesterday was a very special day, not only did Connah go and visit his Great Grandma and Cousins in Glossop we also went to Leeds and picked up a very special adition to the family. When Connah was first diagnosed back in Aug 2006 he had a special friend called "Monty", with the amount of time we were spending at hospital and because Connah was constantly neutrapenic we decided that we had to take Monty back to the rescue shelter where we had got him from, he was a loveable dog and was very soon re-homed. Any way as Connah got better he wanted Monty to return. This couldn't happen as we did not think that the time was right and of course Monty was living with someone else. As time past Connah kept returning to the subject of Monty and we decided that it was about time Monty that Connah had a new friend. So we looked for a friend that was manageable and would fit the bill as a good play mate. So we traveled up to Leeds yesterday and picked up a Dachshund puppy and guess what Connah loves him and has decided that Monty has returned in spirit just in a smaller form. So he has also be named "Monty". I'm sure that there will be lots of "Connah & Monty" stories to relate in 2008. Good Luck to everyone in the New Year. Love to you All, Debbie, Jim, Chris, Connah & Monty xxxxxxx
PS Have just read todays messages and as always we are really pleased that people all round the World read Connah's site and leave messages. Thanks Katherine for your message, perhaps I "Embelished" a little bit on the tea drinking, they are just fruity chinese tea bags you can buy in the super market. Anything that we give Connah we always checkout thourghly with medical practitioners before hand and try ourselves. I can hear giggles from the livingroom, I wonder what they are up to now!
Posted on: 27/12/2007
Hello Everyone. Well the days of Christmas have been very busy, I have had lots of presents to unwrap and lots of playing to do and there has been some good movies to watch on tv and lots of good stuff to eat, all organic though and I even started having Chinese herbal tea to help me de-tox, it was a bit yukki, but Grandad cheayed and gave it me to drink when I was in the sauna so I drank it all. I hope that you all had a very good Christmas like me . Thank you to everyone who has left messages and sent me cards and presents and given time to think of me and wish me better. I am really well, except for a stye in my eye (where I put goo from one of those aliens that grows in water). Night, night everyone. Love You All. Connahxxxxx
Posted on: 15/12/2007
Hello everyone. Guess what I have been doing? I have been ripping the wallpaper off the wall in the dinning room, but its okay as Nana has decided to decorate before Grandad comes home (3 more sleeps, yippeeeee). So I was helping her and having a good time too. Theres more fun to come though, she might want me to help put all that guey paste on the paper, what do you think? We had our School Nativity play on Wednesday & Thursday and I was a Star over Bethlehem and we all had to sing "Away in a Manger" I hope someone made a video for Grandad to see, Nana says that she hopes not as this star spent most of his time on stage with his finger up his nose, oh no!Lots of parcels keep coming with the Postman, but Nana keeps saying that they are for Grandad, I don't think so! Thank you Joanne for the present, Nana put it under the tree & thank you girls for all those messages with the kisses at the end, I will be coming round to collect with my miseltoe. Must go and do some more paper pulling. Love You All. Connahxxxxxxx
Posted on: 07/12/2007
Hello everybody. Guess whose in trouble, again? It wasn't my fault. I was at "After School Kids Club" and we were all chasing around so we decided to chase each other outside. Well it was raining, A LOT, we had our coats on but we got soaking wet and guess who was the only one to fall over in the mud just before Nana came to pick me up? You guessed, Me. So not was not pleased and rushed me home and stripped me off and threw all of my clothes, even my coat into the washing machine and my shoes were soaked so they had to go to dry out before they could be cleaned. So when Grandad phoned I was just getting my pyjamas on and Nana told him what had happened. So he wanted to talk to me and guess what I told him? I told him how relly good I had been at school doing my reading and that he won't believe my new reading book when he comes home as it has lots and lots of words in and It will be the school Christmas Fair tomorrow and I have to learn my part for the School Christmas Play next week and guess what, he forgot albout asking me how I had got wet and what happened to my clothes (hehehehe). I'm sure he will have forgot by the time he phones tomorrow! Thats it for now. Love You All. Connahxxxxx
PS We are all glad that you had a smashing time in Aberdeen Jan and Family. I bet it rained though, it did all the time we were there! But we had a really Great time! So we will go back in Summer time to see iall the buildings sparkle! Glad you liked the picture and that it got home with you okay. Thank you Joanne and Grandad will be phoning you when he comes home as we will try and come and see you at work in the Big City! Love Connah.
Posted on: 03/12/2007
Hello everyone. What a day we had yesterday. Nana had made lots of preparations for Santa coming to visit and nearly everything was blown away by the huges winds and rain that we had. Santa couldn't come to the garden as it was too bad so Uncle Billy & Auntie Heather, Tony & Debbie, Christian & Kerry and lots of other people rallied round and help move everything, including the snow down to the village center, but as they were setting up they were told that they couldn't use it as there was going to be a dog show at 2pm. So then everyone rushed round and moved everything again to the old School house. Well everyone did a Great Job and Santa finally arrived and came through part of Gronant with his sled. All the kids were very glad to see him and he spoke to everyone. We had musical chairs and even snowball fights and Santa told me all about Mrs Santa and life at the North Pole. We had a really good time. But he had to leave early as Santa's Donkey (couldn't bring raindeer due to the 'Blue Tongue" outbreak) was very cold and wet in the bad weather. So sorry to the children that missed him and he will remember you, if you have been good "like me". Nana is very busy doing lots of cleaning up today. So I would like to say "Thank you Nana for getting Santa to come and see me again this Year". Perhaps we can go and see him next year at home? Thats it for now as I am getting ready for Auntie Jenny coming as we have lots of hard work to do today. I have gone up onto another level of reading books as I am doing very well with my reading. Love You All. Connahxxxxxx
PS Thank you to everyone who helped Debbie organise this whilst I am away. The weather was awful yesterday and it was really good of you all to put so much effort in. If I have missed you out from above its only because you don't get long for 20p on the phone from where I am. Thanks again. Jim
Posted on: 27/11/2007
Hello everyone. Guess what I did when I was helping Nana get ready for Christmas? Well she was getting some of the Christmas things out of the attic with Ryan and his friend, they would not let me climb up the ladder as they thought I might fall and hurt myself, so guess what I pushed the ladder up till it caught on the catch and they couldn't get out of the attic and I couldn't reach the catch to let it down, so Nana was not pleased, in the end Ryan's friend was the lightest so he had to jump down and release the ladder. In the end they saw it was funny or else it would have been "blue blisters" for me! Then yesterday I was at kids after school club and we were dressing everywhere up for Christmas and had real good fun. I told Grandad all about it on the phone last night. Don't forget everyone Santa is coming on Sunday so if you have chance come down and see him. Love you All. Connahxxxxx
PS Thanks to Jan & Family in America who sent me the special signed photo and have a safe flight to Aberdeen and do lots of shopping at Trinity Mall while you are there.
Posted on: 23/11/2007
Hello everyone. Guess what arrived in the post today? A signed picture of Ray Liotta. That is great, thank you very much for sending it and I will put it up on my wall inbetween Spiderman and Power Rangers. I had a good ride on my bike yesterday as Grandad brought it to school to meet me so that I could ride it home, I had been telling all my school mates that my new bike was coming all day long. My teacher was so glad when it finally arrived and she could see it! Yesterday Nana went to the Teacher / Parents meeting to see how I was doing at school and she was told that I am doing really well and that my reading and writing is good and that I am well up to standard within the class. So well done Auntie Jenny and everyone who helps me with my reading. Must go as today I am a "Sea Serpent" in the play at school for "Diwaali", Grandad will miss it but Nana will be there to tell him all about it. Love You All. Connahxxxx
Posted on: 21/11/2007
Hello everyone. We are now over our fabulas trip to Scotland. I have been doing really good school work and have had two new reading books since I have been back and Auntie Jenny has today asked if I can go up onto the next level of reading, how good is that. I am driving Nana nuts though, since I have been home the weather has been too bad to go outside, so I have been riding my new Spiderman bike altthrough the house, this is okay until I forget to use the brakes and run into the radiators or the furniture. I even sat on it watching tv last night! Thanks for all of the messages, especially the one from Santa. Must go as its time for doing some more school work. Love You All. Connahxxxx
PS A special thank you to The First Minister of Scotland for donating a bottle of his Whisky to be auctioned for my appeal and for writing to Auntie Sylvia and to tell her that he is keeping his eye on my progress and thinking about me. Thanks again to all of the lovely people that we met in Scotland that were so kind to us.
Posted on: 20/11/2007
Hello everyone. Sorry that Me and Grandad are slow putting this on but we all got back really late from Scotland last night and as I had had a sleep in the car I was wide awake and wanted to play when I got home so we did not get to bed until 1am this morning. On Saturday Nana, Grandad, Auntie Jean and Me set off for Ellon. It was a very long journey, but the weather was not too bad and there was not a lot of traffic. The time passed quickly as everyone took turns at answering my question every 5 minutes of "Are we there yet?". We arrived at about 5.30pm and was met by Auntie Sylvia and Uncle Nils at the B&B where we were going to stay. We met a very nice lady called Mrs Thomson whose house it was and se really looked after us. After a quick wash and brush up we went off to have dinner at the Italian Resteruant in Ellon. On the walk there we met Carol my hearler for Scotland who was with Auntie Sylvia and Uncle Nils. Carol and Jean had lots to talk about as they have both been helping me to get better. Carol is really nice and I gave her lots of hugs and kisses to thank her for helping me. We had a smashing meal, made all the more special by the Owner "Salvatori" doing some really good singing whilst we were eatting. We can all recommend a good night out in Ellon.
Next morning Auntie Sylvia, Uncle Nils and Carol picked us up and we drove into Aberdeen to the Trinity Mall where we met Linda (who Manages the Center) Morag, Steve and a lot of her team. They have been Fabulas in arranging a Very Special Day for me to be Santa's Special Helper and to ride in Santa's Sliegh through the Center of Aberdeen in the Parade. First we had to meet Morven who is getting married next week to Gianni in Aberdeen, she was collecting one of my paintings to give to Jan (from Maryland) who is coming over for the Wedding next week. Have a very good day and All the Best for the future. Then we went and met Santa, how good is that being the First One to meet Santa before Christmas! and he gave me his bell to ring and asked me if I had been Good, guess what I said? Well there is only one answer to that question! He told me not to be frightened of the Raindeer as they are a bit big, but very friendly. Then we rushed off to get in the sliegh. There was a Band of Pipers, Cheer Leaders, People in Fancy Dress and Santa, Grandad & Me in the Sliegh. It was Smashing going through the crowds, I was shouting "Merry Christmas" "Ho Ho Ho" and waving to everyone. The Raindeer were very good, the biggest one did keep leaning into the sliegh and seeing if I was okay. Wen we arrived at the Mall we went into Santa's special place and I helped to hand out gifts to everyone and when I had Santa's "Naughty Helpers" hat on I was ringing the bell Very, Very LOUD! he he he.
Later we went back upstairs to see Linda & Morag and they had more surprises!!!!! First Santa came back and he had some special gifts for me, a new Spiderman bike (Thanks Argo's in the Mall), Transformers racing car set, Spiderman suit and a web slinger (watch out everyone, spidie's about). Then they had all cards from everyone in the Mall wishing me to get better soon and they had raised a Terrific £1,000.00 from all of the shop's and stall's in the Mall. Thank you very much everyone. We had a Fantastic time. But there was still more to come. After we had some lunch we went to see the night time parade which was also very good and then as it was a bit chilly we went down and got on a bus to go to the "Beach Ballroom" to go and join in the party. It was a smashing time and I did lots of dancing with Auntie Sylvia and Carol and helped the Magician do some magic and then Linda and Morag arrived and I got more presents off Santa and even presents from the Lord Provost of Aberdeen. At the end of the night we got back on the bus and went back to the Mall to pick up our car. I was tired so Grandad carried me the last bit, but it had been a very long day. All of the people that we met in Aberdeen and Ellon were really, really nice and we had a terrific time. Next day we had a long drive back in the rain to Gronant and I fell asleep so the only sound in the car was Nana's "Sat Nav" which kept telling Grandad that he was driving over the speed limit! But he wasn't really, it was 10 miles out on all of the speeds, bet it wasn't made in Britain! Thats it for now everyone. Love You All. Connahxxxxx
PS Debbie, Jim & Chris would like to thank Linda & Morag (Trinity Mall Aberdeen), All of their Staff especially Steve (from Leeds), Everyone from Trinity Mall Stores and Stalls. Salvitoria and everyone at the Resteraunt in Ellon. The Lord Provost of Aberdeen, The Healers Carol & Jean, Auntie Sylvia, Uncle Nils and not forgeting SANTA! Love to you All for giving Connah a truely memorable day
Posted on: 16/11/2007
Hello everyone. We are all over our coughs and colds just in time for our journey in the morning to Ellon & Aberdeen. Today we went to Liverpool to see Baby Emma who we last saw in Alder Hey Hospital some months ago. Since then her treatment has been going really well and soon she will be having her "Hickman Line" out too. It was her 3rd Birthday and we went over with a present for her, a Teddy Bear which Nana had got at Sea World in San Diego. Her Mum and Dad had also got me some presents, lots of new Spiderman games, Great! We are now back home and getting packed for tomorrows "Big" Journey up to Aberdeen to meet Santa, Yipeee. I hope that those Rhiendeer are well rested as they might be in for a " bare back gallop" down the high street on Sunday! Must get to sleep as we are all up early in the morning. Looking forward to seeing you all in Aberdeen. Love You All. Connahxxxxx
PS Grandad said that he used to work for a very nice man from Aberdeen, James Kondal when he worked out in the Desert, hope he is at the Parade!
Posted on: 13/11/2007
Hello everyone. Yippe today was my 6th Birthday and I had a smashing time. I woke up this morning and the Birthday Fairy had been (as I had been a good boy) and left presents all around the house. It was good fun hunting for then and unwrapping them. Then the postman came and delivered more parcels and more cards. Then Aunt Jenny came nd I had to settle down for school work, but not for long as I was too excited, Auntie Jenny hopes that I will pay a bit more attention tomorrow!! Then it was off to school with a big cake to share with all of my friends at break time. Then at home we had more cake and party poppers with Daddy and Nana firing the poppers, a quick visit to "Daisychains" to say hello to everyone and then back to pick up Jack, Kyle and Thomas to take them out for a Birthday Dinner. Then we went back to the house to have icecream and fireworks and open the last of my presents. Thank you to everyone who sent me a message, card, present or was thinking of me on this Very Specail Day. Love You All. Connahxxxx
PS All of the presents were terrific, but there was one that I really, really liked. You can see from my photo's. Thank you very much to Joe Ogden (She is a very nice Lady who lives in Manchester). Baby Emm we will see you on Friday, Nana will give you a call
PPS. This was a Very Special Day for Connah as we had been assured by almost every Medical Professional we have met over the last year that Connah would not be around for this Birthday. Thank you to everyone who has helped and supported us over the last 12 months. Next Birthday we plan to have a Big Party in the garden here and invite as many of Connah's supporters that can attend. Love Debbie, Jim, Chris & Connahxxxx
Posted on: 11/11/2007
Hello everybody. Not too good a week this week as both Nana and I have been ill with coughs and colds, I'm a lot better but Nana is hanging on to her's for a bit longer! I have still been in school in the afternoons and it was Kyle's Birthday on Friday, so on Saturday morning Daddy and I walked round to his house and took him his present. Auntie Jenny came last week and she is pleased that I have kept up my reading whilst being away. Auntie Jean came round today and gave me more positive healing on top of what Auntie Carol sent me last night and you know what that means? It means that although I have not been well I am still running round the house and playing and jumping and fighting with Daddy and have 110% energy, thats what all this good organic food and positive healing does for you. "I am Better"!
Today Aunti Ellen and my Cousin Pheobie came to visit and bring me an early Birthday present as they cannot come over from Manchester on Tuesday. So they brought a nice Birthday cake like a football, which we had after dinner and a present, my first "Transformer, Silverstreak". We had a good time playing games and we had "Scoobie" out, but he was a bad lad and poohed on Auntie Ellon's hand while she was holding him. Then after dinner Pheobie and I watched "Spiderman 3" on the tv. Thanks for a smashing time Auntie Ellon & Pheobie.
Tonight I'm having a play with my new Transformer while Nana has a lemsip and a relapse on the settee and then it will be off to bed for school tomorrow. Night, night everyone. Love You All. Connahxxxx
PS I changed my toothbrush tonight! When I was not well I had to have a very soft toothbrush (same as a babies) so that it didn't make my gums bleed. Now that I am Better I have got a new "Buzz Lightyear" electric toothbrush, Yipeeee!
Posted on: 05/11/2007
Hello everyone. Just a short letter tonight as we are all really, really tired as we just got home from America today. The nice people from Delta Airlines brought us home safely. First from San Deigo to Atlanta and then after a short stay we then flew to Manchester. Everyone was very nice and reallly looked after us and when we got to Manchester the Captain let me have some photo's taken in his Pilots seat and then he gave me his Special Pilots Wings. Now I can fly any airplane I want! Thanks to all of the nice Ladies who looked after us on our way home. When we got to Manchester Uncle Clive was waiting to pick us up and take us back to Gronant, thanks Uncle Clive. I was planning on going to school in the afternoon, but I have a cold and I fell fast asleep on the settee, while Nana cleaned all the house. Later on we went round to Auntie Heather and Uncle Billies for their Spectacular Firework show, it was really good and I had lots of fun and I showed everyone how to do bowling on the Wii as I am really good at it. Its good to be home again and tomorrow I will see all of my friends at school as Nana has put lots of "Vick" on my chest before going to bed so I should have no cold in the morning. Night night everyone. Love You All and thank you for all of your Positive Thoughts. Love Connahxxxxx
PS. Please everyone could you say a special Prayer for Jesson tonight.
Posted on: 03/11/2007
Hello everyone, I had a really great time with Shamu yesterday and the Dolphins and Seals and all of the other smashing friends I made at Sea World. Grandad and me went down a water ride and we both got soaked through as people were firing water guns at us, which didn't help Grandads cold, but it was really good fun. I had my picture taken with a Big Walrus and we went on the Sky Train right up in the air. There are also lots of different cartoons on the tv over here, including a new Ben 10 movie, which starts in two weeks but we will miss it as I am coming home tomorrow. Guess what I have got Baby Emma in Liverpool for her Birthday? Sorry Nana says that I can't tell so you will have to waite until we come over to Liverpool to see you. Bye for now. Love You All. Connahxxxxx
Posted on: 01/11/2007
Hello everyone. Guess who I had breakfast with today? I was having my toast and Grandad said to go and shake hands with the man on the next table and say "We like your movies". He was very nice and asked my name and how was I doing and where I came from, I told him Connah and that I was fine and that I am from Wales. Grandad said that his name is "Ray Liotta" and that he had been in lots of really good films. He was sat with his friend David who helps him make movies. Perhaps he will fly over to Wales and have tea with Santa and me when he comes to visit on the 2nd December. We are leaving the hotel today and going to another hotel nearer to Sea World in San Deigo so that we can go and see Shamu tomorrow and then guess what? We are going shopping for Ben 10 for my Birthday in two weeks time. Hope that you all have an exciting day like me today. Love You All. Connahxxxx
Posted on: 30/10/2007
Hi Everybody, only a short message today. Connah is fine and doing really well, not much sunshine today though, which reflects our mood. Jesson Wragg's Mum Helen e-mailed us today to say that Jesson had lost his fight against NB after 4 long years of fighting. We would like everyone to say a Prayer for Jesson and his Family. Thank you. Love to Everyone from Connah, Debbie & Jim xxx
Posted on: 29/10/2007
Hello everyone. What fun we are having. I was running in and out of the "Big Sea" yesterday, it was too cold to swim but we had loads of fun being chased by the waves up the beach, Grandad said his feet were like blocks of ice. Later on we went back to the hotel and me and Nana went in the swimming pool and I was racing her and then when she was beating me I jumped on her back. Grandad has some photo's which he will post when we get home. Everyone is very nice and the food is really good, I eat it all. I asked Grandad if I can drive one of the little carts that we see everyone in, but he says that you have to be over 65 and a golfer to drive one! We are going to Sea World in a couple of days to see Shamu the Whale, I wonder if he is from Wales too! We are all okay and "I AM GETTING BETTER". Love You All. Connahxxxx
Posted on: 25/10/2007
Hello everyone. Well what a very long day we had on Monday, we had one very long flight to New York and then another long flight to a place called San Deigo. When we were flying in it was dark and you could see all of the fires blazing away, but we are okay and the weather is nice and warm. Everyone is being very nice and I have been in the swiming pool and down to the beach, too rough to swim though. We have seen some people here who have had a look at my condition, they really can't believe how much energy I have and how much playing I do. Grandad has some photo's but you will have to wait until we come home before he can put them on my site. Any way must go as its time for breakfast here. I was up at 2am wide awake watching cartoons when Nana and Grandad were fast asleep still. See you all soon. Love You All, Connahxxxx
PS Thank you for all of the new messages on my site. Please keep all of the positive thoughts coming my way as I really, really need them.
Posted on: 18/10/2007
Hello everyone. I was at the hospital yesterday to see Dr Hesseling, he is nice but his hands are still cold! I got weighed and I am now 28.3kgs and I have grown to 115cm, that is really, really big. The Doctor said that I was fine and that my bloods were all okay and he will see me again in another 6 weeks. So it was back home to tell Scoobie and then into school. We have all had to learn a new song as our Head Teacher Mrs Homard is leaving soon so we were all practicing it in the car coming back from the hospital.
I had a message on my website today from a Lady in Scotland called Morag who has asked if I would go and be Santa's Special Helper up in Aberdeen on the 18th Nov. I checked with Scoobie and he will be okay for a couple of nights with Ryan so YES PLEASE is my answer to that and thank you very, very much, can't wait to show those Cheer Leaders how to really Dance! Night, night everyone. Love You All. Connahxxxx
Posted on: 15/10/2007
Hello everyone. Well only one more sleep and then Grandad will be home again. Nana said Yippeeee! Because then she will be able to have a rest while Grandad chases me round. I said Yippeeee too as Grandad does good swings and rides on his back, until it gives out. I am not looking my best though at the moment as when I was in "After kids Club" I was chasing round after Dean and I slipped and bashed my legs and cheek. Now I have a big bruise on my face, next time I will listen when I am being told to stop, maybe! I forgot to tell Grandad about the new painting of Spiderman that I have on my wall, Sean painted it for me and you can all come and see it when you visit. Thanks Sean. Nana had me weeing into a bottle yesterday, she is funny, sometimes Ican't get it all in the toilet so how do I get it into a bottle! It is for my next Monthly check up this week with Dr Hesseling at Glan Clwyd, he is nice but his hands are cold! Well time to go and get ready for school, Auntie Jenny is coming today. Love You All. Connahxxxxx
Posted on: 10/10/2007
Hello everyone. I have been a really good boy lately and done lots of good school work and Helen came and I did some extra work on my sounds. Any way I am always telling you about that, so I want to tell you about my friend Scoobie and what a good time playing together that we have. But I will let him tell you as I do all of the talking.
Wake up to the feeling of raising swiftly into the air, open my eyes and I am in the air! Flash from my nice warm bed, out of the kitchen, through the dinning room. Flashing over the well polished dinning room table I can see my reflection, a giant hand is holding me up in the air, amazing! Into the living room and descend at stomach churning speed to land gentle as a feather on the carpet. I just have time to look around before a huge green disk comes hurtling towards my head and just hovers in front of my face, Oh its my favorite, cucumber! Panic over. Breakfast finished I poke my head out for a quick look to see what is happening. I am surrounded by cars, time to make my escape, the cars chase me, run faster, the cars speed up, move quicker, the cars catch me up! Head back in shell and just wait for the Power Rangers to arrive and rescue me. It would be quite cozy in my shell and I could get some more sleep in, if only someone would stop shouting “I AM BETTER”, EVERY 5 MINUTES. What us Tortoises have to put up with sometimes!!
Thats good fun that we have, but I don't put the cars too close and I wouldn't drop him when he is flying as he is my good friend. He will be a lot quicker when he gets bigger I bet! Thats it for now. I AM BETTER. Love You All. Connahxxxx
Posted on: 09/10/2007
Hello everyone, Well what a Smashing night I had on Saturday in Blackrod. Thanks to Auntie Pat Charles, Sean, Carole and Dorothy and DJ Steve. I had a great time dancing, with Nana, Auntie Carol, (Uncle Terry doesn't dance though!) Amanda and everyone else. I also helped Steve out picking the music and I helped Auntie Pat auction off some of the paintings. We raised lots of money with the raffle and the auction 1,650.00 for my Appeal. Thank you very much to everyone who came, I hope that you all had as much fun as I did and thank you to Auntie Pat for arranging everything. I had a good sleep Sunday, I hope that you all did too! "Scoobie" missed me while I was away, but I looked after him until I flaked out on the settee. I am so glad that I have lots of Friends all around, thank you for helping me get better. Love You All. Connahxxxxxx
PS Grandad forgot to mention Emma who has done a really good job helping me with "Needles" and who had a good time and got me up for dancing and best of all snuggled me in all the way home,so I had a good sleep. Thanks Emma.
Posted on: 02/10/2007
Hello Everyone. Nana says "No more Positive Healing for me" ( she was only joking) she cannot keep up with me, I have been racing around all Monday and never stopped talking, did very good work for Auntie Jenny, went to school, helped Neil build the wall in the garden, did lots of jumping around in my trampoleen, played football and did good work with Emma on fear of needles. "Scoobie" got so disy he went back to bed! I was still running around at 10pm and then I flaked out and did not wake up until 07.15 this morning and guess what, when I had had a drink I went back to bed again. That was some good healing. Thank you to everyone who thought about me and to the people who lit candles for me.
Last Night Auntie Sylvia and Uncle Nils did a great job at the Pampering Party in Ellon to support my appeal. There was lots going on, a Lady called Maureen sang a song called "The Spinning Wheel" and a message was read out from The First Minister" in Scotland supporting my Appeal and lots of people turned up and bought some of my paintings and had a good time. Antie Sylvia & Uncle Nils raised a whopping 1400.00 pounds. Thank you very much and thank you to the very kind people in Ellon & Aberdeen who support my Appeal. I hope to come up and see you all again soon.
Auntie Pat and Auntie Carol are now back from their trip to America and they said to remind everyone of the Grand Auction on Saturday 6th Oct at Portofino's Resteraunt in Blackrod. There will be lots going on and lots of paintings to see, plus some celebrities so come along and have a good time.
I am going to the hospital today to see how I get on with needle's. Grandad says that I'm very brave and he know's that I will do well. Well I asked "Scoobie" and he didn't want to go so perhaps Emma should talk to him too. I will let you know how I got on tomorrow. Every time you think of me and send me your Love, I send it back to you with a Big Big Smile! Love You All. Connahxxxxx
Posted on: 01/10/2007
Hello Everyone. Thank you all for your support on Connah's Positive Healing Night. Connah woke up this morning full of beans and good health and was soon checking to see if "Scoobie" had had a good night too! We know that this is going to be a long hard struggle to beat this illness, but we also know that with all of your support and Connah's Determination and Faith we will do it.
Thanks once again and please keep thinking of Connah getting better, at the same time once a month from now on if you can. We know it makes a difference.
Love You All. Debbie, Jim & Connahxxxxx
Posted on: 30/09/2007
Hi Everyone. Could you all please remember to think of Connah tonight at 10pm UK time. We would like everyone to think of Connah getting better and getting this illness out of his body. So we would like you all to think "I want Connah to get better". Please spend a few minutes thinking this and we know that it will definately help Connah. When you have finished doing that please spend some time thinking the same for Jesson Wragg, who is really not well at the moment.
Thank you all for your support and Loving Connah.
PS Scoobie came home with Connah last night, he was a bit upset about leaving all of his friends, so Connah talked to him all the way home in the car and then gave him some cucumber to eat.
Love to you all, Debbie, Jim & Connah xxxxxx
Posted on: 29/09/2007
Hello everyone. Guess what! I have been such a good boy all this week, well almost, there was a little problem yesterday when Neil was building the wall and I kicked my ball at it and knocked off one of the slates, but he soon fixed it and I put the ball away! Anyway, I was good for Auntie Jean and I have had new reading books from school and Auntie Jenny says that my colouring is really, really neat and even told Grandad.
So when Nana took me to the pet shop in Rhyl we looked at all sorts of things and in the end Nana and I decided on a little Tortoise. I have called him "Scoobie" as "Ben 10" did not seem right. Anyway we are going to pick him up after the gym on Saturday morning. I told Grandad and he said it was okay with him as I was his "Bestest Pal" for being good and looking after Nana and trying hard all of the time to "Get Better". So when Grandad gets back he will put some photo's on the website of me and Scoobie playing in the garden (thats if it stops raining). Thats all for now. Thanks to Carol for my new badge, I am wearing it. Love You All. Connahxxxx
PS Please everyone don't forget tomorrow night 10pm to 10.30pm and I would like you all to think of me getting better and better and say "I want Connah Broom to get Better". Please also think of Jesson Wragg who is really poorly at the moment. I met him when I was down in London at UCLH. He has the same illness as me, but he has been fighting it for much longer. Thank youx
Posted on: 27/09/2007
Hello everyone. Well I continue being a Good Boy for everyone, which surprises even me! They must not be looking too hard! I went to Katrina's Birthday Party yesterday and had a smashing time and next week I am going to "Funnybones" with Tommy again, we always have a great time running around there. Tomorrow I should be going to the Zoo with my mates from School, but they are going to go and pet the animals. My eye's are still soar from Monday so Nana says I can't go, but to make it up she is going to take me to a shop in Rhyl where they have all snakes, dragons and spiders and they let you touch them. I told Grandad on the phone last night that Nana was taking me for a pet, he said it would be just like being back in the desert with the spiders and the snakes! Well thats it for now. Night, night everyone, Love You All. Connahxxxx
PS Thank you Jan (from America) and family for the present. I opened it when Auntie Jenny was here and she wanted to take it home with her. I told her "No Way". Grandad said he will put a picture on the website when he comes home xx
Also remember everyone not long till Sunday when we have our Positive Healing Connah Day, so work out those alarm clocks for 10pm Sunday night UK time, we want everyone thinking of Connah at the same time. If you read this and have friends that know of Connah please pass this on, the more people the greater the effect. Thank you all. Remember all you have to do is believe and it will have a positive effect.
Posted on: 25/09/2007
Hello everyone. Well today was a bit different. Nana had to go down to London with Auntie Heather to see Dr Gaze at UCLH. Auntie Jenny came round and we did school work (and I was good), then Nana and Auntie Heather went off for the train and Auntie and I had lunch with Auntie Jenny before school. School was good and then it was "After School Club" with Tommy, Auntie Sara (Tommie's Mum) then took us both back to her house for tea and we had a good time playing. Grandad phoned up from work to see how I was and then Nana came round once she got back and picked me up, by then I was really tired and ready for bed.
Nana said that the Doctor had told her that I was looking very well (he looked on my website) and he had read the latest reports from Glan Clwyd and that there was no need to go for any treatment now. So we are all really pleased about that. He also showed Nana all my pictures (my scans) and explaind them and answered all of Nana's questions, so thank you Doctor Gaze. We can keep going for my monthly checkup's to Glan Clwyd and they will keep him informed about me "Getting Better". Night, night everyone. Love You All. Connahxxxx
PS Carol is the Lady who sends Connah healing from Ellon in Scotland. She has kindly donated one of her drawings (see Connah's Photo's) to be auctioned for Connah's Appeal. Thank you Carol, a little bit from Carol:
I ahve has always been an artist in my heart and was even commissioned by Lord and Lady Aberdeen when art was my main creative outlet. I was approached to support the Connah Broom Campaign recently because of my Reiki healing abilities, but was inspired to auction one of my original artworks, ‘Station Road, Old Ellon’. Please contact Carol at: email@example.com
Posted on: 23/09/2007
Hello everyone. I was really a good boy in school all this week doing good reading and writing and getting another new reading book to bring home for the weekend. I saw Auntie Jean this week and she came and did healing hands on me and I saw lots of Auntie Jennie who also said I was a good boy and the best thing was that Emma came and I let her put a needle on my arm for 29 counts, which was very, very brave of me as I really don't like needles at all. Next week we are going to the hospital to have a needle put on my arm there, thanks Emma.
Grandad has had an idea which he has talked to Carol about and she also thinks that it would be good. All this Positive Healing that everyone sends me makes me feel much better. So Grandad thought what if everyone sent the Positive Healing at the same time on the same day with the same thoughts. If we could all do that once a week then we think that "God & The Angels" that watch over me will help me get better much faster. So I would like everyone that Love's me and has been helping me get better to think of me on the last day of the month, Sunday 30th Sept between 10pm and 10.30pm when I am tucked up in bed fast asleep and say "I want Connah Broom to get better" and think of me getting better and better until all of this illness has gone out of my body. Thank you all. Night, night everyone. Love You All. Connahxxxx
PS Thank you Jan and Family for the nice card .
Posted on: 20/09/2007
Hello everyone. Since coming back from Scotland I have been a really "Good" boy. I got two stickers off the teacher at school for helping and Auntie Jenny says my writting is very neat but just a little bit small, she said she may have to use Grandad's glasses to see it. Also I have a new reading book that I am doing well at and a new "Ben 10" jigsaw that is very hard but Auntie Jenny and me do it together, she needs help! After school I went to the park with my friends and we had great fun chasing each other up and down the skateboard ramps.
Yesterday we were building a new wall in the back garden for Nana's plants, so she was pushing the wheelbarrow with the bricks in it up the drive and I was behind her pushing her up the drive. It was good fun and I think that it was the extra strength that my crystal gave me and she would not have made it without me!
Thanks again to all of the people that worked so hard last week to help me especially Sara & Friends in Cardiff Airport and Auntie Sylvia, Ralph & Family, Tony and Carol in Scotland. Night night everyone. Love You All. Connahxxxxx
Posted on: 19/09/2007
Posted on: 18/09/2007
Hello everyone. Well it was back to school today to tell everyone about my smashing weekend up in Scotland. It was a bit of a long drive but Auntie Ellen came with us to keep Nana on the right road and to keep me from falling asleep. We stopped off on the way to Aberdeen as we were all tired on Friday night and had a sleep. On Saturday morning we set off again and after another 4 hours drive made it to the hotel and then met Auntie Sylvia. She was really pleased to see me and we all had lots of cuddles. Then we met Carol who has been sending me lots of healing powers and she was very nice and she gave me a special stone which will help me get more better, it is like a big diammond!
Later on we went to the big BBQ which was held by some really nice people. They gave me a smashing time and really looked after me and I won lots of good prizes on the raffle. Thank you very much Ralph, Doreen and Tony and to all of there family who made me feel very special and gave me such a great time and went to all of the effort and expense to help support my Appeal. I had loads of fun and did lots of running around and meeting new people (including girls!) and dancing and laughing it was great. There was a raffle and I won some prizes and some people had some of my paintings. We stayed up late and when we got back to the hotel I fell fast asleep.
Next day we had to say goodby to everyone and it was a very long drive back in lots of rain. I was asleep for most of it. Then this morning into school to tell everyone about my time in Scotland. I hope that we can go back soon (when its not raining though, as I skinned my toes in my wellington boots). Thanks again to everyone who gave me such a smashing time especially Auntie Sylvia who is doing lots and lots to help me and to Ralph and all his very kind family and to everyone who came to meet me and support my Appeal. Love You All Connahxxxx
Next Adventure. A Lady called Sara who works in Cardiff Airport has done a Fantastic job of raising 2,500 pounds for my Appeal. Thank you Sara and to everyone who helped. Nana is going to be in touch and Sara has asked if we can come down to the airport and meet everyone. Maybe I will get to drive the planes around (well maybe not the planes, but the Big Red Fire Engines) so I will ask Nana if I can take my Fire Fighters Suit down that I was given at Prestatyn Fire Station. So thank you Sara and to everyone who helped and see you all soon. Love Connahxxxxx
Posted on: 12/09/2007
Hello everyone, sorry for not updating my site for a while but we have been really busy and the phone line was down for a few days so no computer! Last week I went to the hospital to have my monthly checkup and the Doctor said that everything was fine and I was looking very well. Then I went to the hearing dept to have my hearing aids checked and that was okay, then off to Spec Savers to have my special hearing aids checked and they were fine too. After that it was to see Helen the speech therapist to have a check with her and she said that my words are coming on better noe that I have two hearing aids in. Grandad says that I am like a well tuned racing car, thats cause he can't run as fast as me. I went back to school, still only in the afternoons as Auntie Jenny comes in the mornings, it was great to be with all my pals again.
Auntie Jean came and saw me and told us all about her balloon ride, which sounded great, perhaps when I'm a bit older I can go too! On Sunday night I fell asleep on the settee, Nana and Grandad didn't want to move me as I had to be asleep at 10.30pm for when Carol sends through her empowerment. Grandad said that at 10.31pm I sat straight up on the settee and then went back to sleep and then the same thing happened at 11pm. Then at 07.30 I woke up and wanted to do jigsaws and had Nana playing "wiggle worm" with me in the dark, she wasn't very good and I won lots of times.
On Saturday Grandad took me to the gym and we had lots of fun as Phil made up some smashing games, however Grandad woke up with stiff legs next day as when we had to do "frog jumps" I jumped on his back and I am really heavy now as I eat all my dinner (27kgs). Next week I am going up to Scotland to see Auntie Sylvia and go to the BBQ that she is helping to organise. We will have to take our coats and boots as it is starting to get a bit cold up there.
Thats all for now. Thanks to everyone who sends in e-mails and messages to help me get better, we are all doing a good job. Love You All. Connahxxxx
Posted on: 02/09/2007
Hello everyone. Yesterday Daddy took me to the gym for my workout and I had good fun jumping on his back while he was trying to do his press ups, Grandad had time to go down stairs and have a workout instead of me jumping on his back. After that we all came back and got cleaned up and went off to Chester to get me some school clothes for next week. Daddy bought me a game called "Barnyard for my Wii and a new Manchester City shirt. Today Auntie Vicky came round with Lewis for dinner and Lewis showed me how to play Barnyard as he has it on his playstation. We had lots of fun playing and even managed 10 minutes outside between rain storms. Nana was not too pleased though as I went down the slide and got all my bottom wet!
After Lewis went home I had a nice bath and a quick play before going off to bed, as tonight is the night that Carol in Scotland is going to send me the special gift for getting my body tuned for receiving better healing. So night night everyone. Love You All. Connahxxxx
PS Thanks to Sarah for holding the Anne Summers Party (Grandad said he will tell me why they had a party and I couldn't go when I am 18!) to support my appeal.
Posted on: 29/08/2007
Hello everybody. Today I had a visit from a very nice Lady called Emma. She is helping me get over my fear of needles, so that in the future if I need to have an injection or blood taken I won't get so upset. She got me to lay on a big piece of paper and then she drew round me and then we filled in the bits in the middle together, it was good fun. After that Auntie Jean came to do "Hands on Healing" and we watched "Inspector Gadgit" together.
After lunch Grandad and me walked round to Dean's house and we all went to play on the park together. We even had Grandad racing us up and down the scateboard ramps! As he is old and slow we always won! Then we went back home and Nana was mowing the lawn so we helped by raking up. Then I got my bike out and I was riding down and up the drive, which made Nana & Grandad really pleased as before I had only ridden down the garden. Later on we had dinner with Steve from next door and then it was off for a wash and bed. Night, night everyone. Love You All. Connah xxxxx
PS Good luck Sarah for next week and thank you.
PPS. Today the Hospital where we visited last week phoned to say that they still had not had the MIBG Scan from UCL Hospital and could we phone them and ask them to send it over, it seems strange to us that one hospital has to ask us parents to arm twist vital information out of another hospital! Its no wonder that Connah has not had any treatment for over 5 months with the delays in getting referals and awaiting test results! We are also confused as to why the new Dr. wants to take another biopsie from the original site, as the analysis of this will even further delay any future treatment. Thank goodness Connah is so well at the moment from everything else that is being done to improve his recovery. Thank you to everyone who is positively helping get Connah well again.
Posted on: 28/08/2007
Hello everyone. Today Nana phoned up Auntie Sara to see if Tommy could come out to play and she said yes. So this afternoon we all went to "Funny Bones" in Flint. This is a big indoor jungle gym and we had a smashing time running around burning off lots of energy for a couple of hours. We were sweating that much that Grandad had to keep stopping us and make us have a rest and a drink. We had to come home so that I could have a bath before we went off to "Happy's" (Lodge Inn) for dinner.
Auntie Sylvia phoned today to say that she has things well in hand for her "Pampering Night" up in Aberdeenshire on the 1st October. Also Daddy phoned from work tto see what I was up to. So I had a smashing time and was soon ready for bed when I got home. Night, night everyone Love You All. Connahxxxx.
Posted on: 26/08/2007
Hello everyone. On Friday night Nana & Grandad went with the paintings to the Gronant Inn to raise some money for my appeal. I stayed at home with Julie from Daisy Chains and her daughter who came to look after me. Thank you to everyone who went to the auction and bought our pictures. Nana said that just before they left a Lady called Myra Lightfoot brought some of her paintings to be auctioned and two of those sold as well, so thank you Myra. The night raised £465.00 towards my appeal and everyone had fun.
On Saturday Grandad and me walked back down to the Gronant Inn and picked up our car from the car park. I got stung by stingy nettles and Grandad showed me a leaf to rub on it to take the sting away. Then I came back and played on the park with Katrina & Daniel until we went to do some shopping. Grandad bought me a new game for the Wii so we can have more fun when its raining. After dinner I fell fast asleep on the settee as I was tired from our long walk in the morning. Grandad put me to bed as I am now too heavy for Nana to carry.
Later on today Auntie Jean is coming to do healing hands and then Carol the Lady from Scotland will send some extra healing to help me get better quicker. By for now. Love You All. Connah xxxxx
Posted on: 23/08/2007
Helo everybody. Auntie Jenny came by to visit me today just to see how I was getting on on my school holidays. Then I played out in the garden and had my lunch with Grandad up on the decking. After lunch Auntie Paulina & Uncle Clive came round and brought some more pictures from Auntie Pat and Sean. Auntie Pat has told Nana that Sandy the dog who sends me messages is not very well. So come on Sandy get well soon and come and see me.
I had to go to the dentist today, but it was all okay except for that thing that they keep proding your teeth with. I have to go again in 6 months, I didn't see the tooth fairy there though! After I came back I helped Nana pack some of the pictures for tomorrow nights auction at the Lodge Inn in bubble wrap. Hands up who doesn't like popping bubble wrap, I do! Spec Savers phoned about my new hearing aids and said that they had spoke to Man City and they wanted some photo's for there club magazine, we may even get to meet Sven! Grandad said not to mention Saturdays match incase Auntie Linda reads my site as Uncle Tony is still crying! Thank you to everyone who wrote in to tell Grandad about the medicine. Thats all for today. Night, night everyone. Love You All. Connahxxxx
Posted on: 23/08/2007
Hello everyone. Yesterday was such a nice day that we decided to go out to the Welsh Mountain Zoo at Colwyn Bay. It was a smashing day out and the sun shone all day. Grandad, Daddy and I went and Nana went shopping for more Organic food for me. We saw lots of different animals, Bears, Crocodiles, Monkey's, Camel's, Kangeroo's, Penguins, Snow Fox's and Parrot's and lots of others too. Also they have a really good play park that I spent lots of time running and climbing and sliding on. Daddy bought me a bouncing ball and Grandad said not to play with it until I got home, guess what, I played with it! Guess what happened, it bounced into the place where the Bears live! I asked Daddy to get it for me, but he said NO WAY! What a scaredy cat! We went home on the train and then Nana picked us up in Prestatyn. Then Daddy and me played on the trampoline until it was time for dinner and then bath and bed. Also a very nice Lady up in Scotland called Carol is sending me lots of special healing energy to help me get better and to help Auntie Jean heal me quicker. Thank you Carol and thank you to everyone who is thinking about me and saying Prayers for me. Sorry I didn't write last night but I was really tired and then Nana & Grandad had another phone call from the hospital that we went to on Monday. Bye for now. Love You All Connah xxxxx
"Update from Debbie & Jim. We had a phone call back from Dr. Pearson at the Royal Marsden last night who gave us a bit more of an update on Connah's condition after looking at some of the scans. There are still 11 tumour sites. Some of the tumour's have shrunk in size and we wil receive a letter giving us the new sizes. 4 tumours have had some calcification (cell death). There has been no growth in any of the tumour's. Having talked to a number of asscoiates around the World Dr. Pearson still feels that the best way forward is MIBG Radiation Therapy. Dr. Pearson is still awaiting the arrival of the MIBG Scan from UCL in London. However he has told us that Connah's Bone Marrow is clear. We asked if he was surprised at Connah's general healthy condition, to which he replied "no, not really"! We asked if the radiation treatment failed was there any further treatment that could be administered and he said that they would follow up with a drug called "Temozolomide", has anyone heard of this and its effects? We expect another update next week after Dr. Pearson has seen the MIBG Scan.
Posted on: 21/08/2007
Message from Connah's Grandad:
Hi everyone. Yesterday we all travelled down to the Royal Marsden Hospital south of London to meet with the leading Oncologist in UK Dr. Pearson to get some details about Connah's Scans from last June, (a wait of 7 weeks) and to try and find out what was happening to the disease in Connah's body as the last thing that we were told was that the tumours were shrinking and some were dying. We went dowm on a very packed train and eventually got to the hospital after 4 hours of travelling. The Doctor had a quick look at Connah and said that he could feel no lumps (which was a good sign) and then sat us down to talk about Connah's situation. Unfortunately he did not have any of Connah's notes and had not had time to look at the scans and had passed them on to some one else to interprate. Fortunately Debbie had taken some paperwork with her so he was able to look at some of Connah's information. He said that he could not make an accurate judgement on Connah's condition until he had read the reports and seen the contents of the scans, however he said that he felt that Connah fell into one of two distinct groups of Neuroblastoma. He told us that the tumours which had shrunk would eventually start to grow again at some time in the future and that Connah required more treatment. We asked why have the tumours continued to shrink without treatment? He replied that this was the effects of Chemotherapy still being in the body over a prolonged period of time( this was a surprise to us as Chemo is flushed straight out of the body shortly after it has be infused). He than said that he woud contact us in a few days time with the information on the scans and what he thought that was the next course of action with regards to treatment should be. As to all of the other stuff that we have been doing ie: Filtering Connah's water, organic foods, goats milk, hands on healing & exercise, this was just brushed over and dismissed as having no contibuting effect to Connah's present healthy condition!
We travelled back to London and almost got caught in a Security shut down of the underground and then came back to Presatyn on an equally packed out train arriving home almost at midnight, having not really gained anything at all from the very long day. Again we wait. However we feel that what we are doing is having a very positive effect on Connah's condition and will continue in our efforts. Thank you all for your continued support.
Love to Everyone
Debbie, Jim & Connah
Posted on: 18/08/2007
Hello everyone. Another exciting day yesterday, even though the weather was not too good. First Auntie Jean came and did some more "Hands on Healing" and then we all went off down to Conway and a nice man there fitted me some new hearing aids. These ones are only small and fit right into my ear with nothing behind to catch on my sun glasses (when we have some). They are from America and Spec Savers have given them to me for free. Thank you very much Spec Savers. Also when we had finished the fitting some peolpe came from the newspaper and did a story on my new ears, you can read it in today's "Daily Post" online.
On the way back from Conway we picked Daddy up from work and he came and played in the garden, helped Grandad move some big stones and played on my Wii, but he is no good at tennis, I am Champ.
Then a man called Neil came to lay some flags in the garden for Nana and when he had finished cementing he got me to write my name in the wet cement. He was very nice and he makes armour for Knights fighting and he has made me a helmet. But Grandad says "No Swords", boring! After that it was late so Daddy and me had our dinner (Fish) while Nana and Grandad cleaned up. Thats all for now. Night, night. Love You All. Connah xxxxxx
PS We are off to London on Monday to see another Doctor, so another long day on the train and I bet it will be sunny as well!
Posted on: 14/08/2007
Hello everyone. Well today the rain came back again so no real playing outside, but I was sat on the settee with Auntie Jean having my "Hands on Healing" and we were being very quiet watching tv, Nana had opened the window for some fresh air and guess what, Auntie Jean looked round and there was a cheeky squirrel climbing through the window and it came and sat on the window ledge inside next to Nana's vase. After a couple of minutes Auntie Jean shouted Nana and she came running in and the squirrel jumped back out of the window. Nana said good job we saw it as it could have been trapped in the house, that would have been fun.
Auntie Sylvia sent two signed footballs. one signed by the Austrailian ugby team and the other signed by Aberdeen FC, they are for my auction night. Thanks Auntie Sylvia. I went to kids club in the afternoon and had a good time having my face painted by Auntie Sarah and playing with my friends. After bath time we all had a big group cuddle before I went off to bed. Night, night. Love You All. Connah xxxx
PS Today we received the long awaited letter of refferal from UCLH to a Consultant at the Royal Marsden Hospital in London. The letter outlined to the Consultant what had been found when Connah had his scans on the 29th June. The information in the letter about the scan results was not as positive about Connah's condition as the information which we had been given over the phone some weeks ago. We can now only wait and see what we are told when we go down to London. The appointment is for next week. Connah's Grandad.
Posted on: 12/08/2007
Hello everyone. I had a smashing day today, my pal Dean came round and we went ffor dinner down in the Gronant Inn and then we played out all afternoon in the back garden. Later on Katrina & Danial came round and we played 3 little pigs and the bad wolf in my new tent. Nana was busy putting hooks and strings onto my new paintings and then Grandad took the pictures and put them on my photo page. Any that don't get sold Nana & Grandad will take to the Lodge on the 24th Aug to auction off along with the paintings that Fire Brigade Boys and Girls have done and the ones that Auntie Pat has donated.
Auntie Sylvia had a really good night up in Scotland and raised over £360.00. Well done Auntie Sylvia and Dan Price has raised £600.00 by running the Great Wales Run and coming in 735th out of 3,500 and with a bad knee as well. Thank you Dan.
Grandad had a message from the Radiation Consultant that we saw in London some weeks ago and then had the scans. He has now refered us to meet the top Neuroblastoma Consultant in the UK down at the Royal Marsden Hospital in London. He has also sent him a CD with all my scan pictures on and we will be able to bring it home after we have seen him. That should be in a couple of weeks time, hopefully, as I have not had any treatment now since February.
Night, night everyone, "don't let the bed bugs bite"! Love You All. Connah xxxxxx
PS I did have a bit of help from Award Winning Artist Sean Pilling in doing paintings 9, 7 & 6 but don't tell anyone!
Posted on: 09/08/2007
Helllo everyone. Well Grandad finally came back home and we all had lots of hugs and kisses. I had had my hair cut so Grandad went and got his cut too, but it just doesn't look the same as mine! We went off to the park today and had a good time and then we went over to the "skateboard" area and had good fun running up and down the slopes and then pushing each other off the top.
Then we came back home and Nana had been mowing the lawn, so Grandad and me had to rake it all up and put it in bags, well thats what Grandad was doing I was kicking it all around until I got in trouble and then I went in as Auntie Jean came to do "Hands on Healing", so I got out of that. Then tonight I was back in trouble as I can't find my new Ben 10, it must be in the garden somewhere, Nana went loopy! I'm sure I will find it tomorrow. We are all going up to see Auntie Pat tomorrow about the paintings, if Grandad can remember the way!
Thats it for now. Night, night everyone. Love You All and thank you for the messages. Love Connah xxxxxx
PS Good luck Jayden and keep in touch.
Posted on: 03/08/2007
Hello Everyone, I have been up to loads of things since school finished, you can bet it wasn't all good! But don't tell Grandad as he is home soon. Any way we had a Great time down at the Fire Station in Prestatyn when Auntie Pat came down and got everyone painting and she gave all the Young Fire Fighters a medal and a "Big Cup" for helping my appeal. This was all presented on behalf of "Droplets of Colour" who are also doing lots to help my appeal so please look on their website. Guess what I got a medal too, only good boys and girls get medals, thats what I tell Nana when she is cross with me! Also my good friend "Wellephant" was there, but he didn't get a medal!
When the weather has been bad I have had to stay inside and thats when Nana gets stressed as I like to be out and running around and playing with my friends. I have been going to Out of School club and seeing some of my friends there. Now the weather has gone sunny again I have been out playing in the garden. Nana thinks I'm a nit! The other day some of my friends were playing on the trampolene and I kicked my football underneath it, so guess what I went under to get my ball and they didn't know and landed on my back, what a nit!
I have been back to hospital and had a monthly check up and the Doctor said that I am doing fine and that he can't feel the lump in my tummy. I told him "I'm GETTING BETTER", Nana says you have to tell everyone in a very loud voice or it doesn't work. My two new hearing aids are stilling going okay and I am wearing them a bit more often now.
Thanks to Dan who ran in a 10km race for my appeal and raised 600 pounds. And Auntie Jan who has been sending me cards from her holiday in Wales & Italy has got home safely. James, Grandad is home next week so we will go swimming then as Nana is not toooooo good on the slide. Sorry to hear about your wrist in plasta Linda, when I see you I will write on it for you, if there is room left!
Thats it for now. Have a good time in Loch Lomond Auntie Sylva. Love to Everyone. Connah xxxxx
Posted on: 21/07/2007
Hello everyone. Sorry that I have not been able to help Connah update his site recently but I have been away. So I will bring you all up to date on what has been happening: Connah has been doing really well at school and with Auntie Jenny. That was until the day he was a little bit naughty and decided to pul on Nana's necklace while she was on the phone. This didn't impress Nana who ended up with a sore neck. Last Sunday was the big painting day which had been organised by Pat Senior and Droplets of Color. Pat even arranged for the clouds to part and the sun to show it's self for a few hours so that everyone could paint out in the garden. We would like to thank everyone who gave up there time and came along to paint. Especially Cllr (Chairperson) Ann Minshull JP, Cllr Fred Gilmore and his Wife Maureen, Artist Ken Wilson, Artist Sean Pilling (who is also doing a brilliant job at selling Connah's CD's), Artist Carolee and of course the Lady incharge Pat Senior. Everyone had a great time and some really good picture were produced. Connah and Nana also helped and Connah cast a "critical" eye over everyone's work at the end of the day. The next volunteers to become part of the "Painting Masterclass" are the Young Fire Fighters at Prestatyn Fire Station and that will be on Wednesday 25th.
That evening Nana, Auntie Jenny and Connah went to see the Dancers of Prestatyn High Dance Class performing at Rhyl Town Hall. Everyone had such a good time. Connah was clapping and singing and even up dancing. He also had time to sneak over and join another family and make friends with their little girl. Thank you very much to Gail Astle who organised all of this and to the dancers who have contributed an amazing 600 pounds to Connah's Appeal Fund.
Things have also been happening up in Aberdeen where Auntie Sylvia is keeping Connah's Appeal in the local papers and doing stirling work organising different events and hopefully the weather will buck up before Ralph's BBQ!
Connah recently went back to hospital to get his 2 new hearing aids fitted and Nana tells me that he seems to be keeping them in for longer (could it be the Manchester City logo that is on them I ask myself?). Just a couple of messages: Kim, Connah wants to know how much the Tooth Fairy left you? James Nana wwill contact your Mum about meeting up for swimming then we can go down the slide together.
Thats all I time for, sorry. Connah sends his Love to Everyone and says he is "GETTING BETTER".
Posted on: 14/07/2007
Hello everyone. I have been having some good fun with a new word game that Auntie Jenny has thought up, its called "Spidermans Web" and its really good fun, I will show Grandad how to play it when he comes home. Also I have been doing good work on my reading and blackboard writting. I worked out how to write "Boss, Cross and Loss all on my own (I'm sure you can workout how Boss & Cross get into my words, yes Nana's rules!). Plus I got a really good school report, which should be good for a trip to the toy shop at some stage.
The other night we went to meet all the Fire fighters and the Young Fire Fighters at the Prestatyn Fire Station. They have all done a really good job raising money for my appeal. They have done "Car Washing, A Bicycle Ride, Ladder Lift" and lots of stuff to promote my Appeal and they have raised a huge 4,000.00 pounds. Thank you very very much and thank you to everyone who supported them. They are also going to do some painting with Auntie Pat who is going to come down specially and do painting, but don't worry she doesn't have to climb a ladder to do it.
I spoke to Grandad last night and asked if I can have a fish in a tank in my room, he said he will see when he comes home as he is a bit worried as I charge about the house and may knock it off, then I would be writting those words "Boss & Cross" on the blackboard again!!!
Night, night everyone and thank you for the messages about me "GETTING BETTER". Love You All. Connahxxxxx
Posted on: 11/07/2007
Hello everyone. What a smashing day I had yesterday with Auntie Susan, Uncle Phil and Nana. We went to the Nova swimming pool and had a smashing time. I have not been swimming since we went on holiday in February, but then Nana and Grandad were always worried about me getting water in my line. But now no line! So I was on both of the slides, the big one and the Frog and did lots of swimming and jumping in and splashing everyone. Ihd such a good time that when I got home I fell fast asleep on the setteee and missed my daily phone call from Grandad and I didn't even wake up when Auntie Jean came to do "Hands on Healing". She liked that as I didn't wriggle around as much! So night night, everyone. Love You All. Conahxxxx
Posted on: 07/07/2007
Hello everyone. Yesterday I woke up and it was the normal biscuits with Ben 10, my light machine with breakfast and then bath and dressed. But then things changed. Grandad had a phone call from the hospital where I had my scans done. It was the Head Doctor, Doctor Gaze. He told Grandad that the first results had come back from the 2 detailed scans that I had (the first one was just a CT Scan). I thought the man was telling Grandad off as at first he was crying and then he was laughing, then he was telling Nana and they were both laughing and crying. Then they said that my "lumps" were getting smaller and that some parts had calcified (cell death). They were really happy. Then Auntie Rhian came and she gave me a big hug and she was happy too. Then they made me go to school so they weren't that happy! But I had a good time with my friends and then it was home for another bath as we were going out after dinner, which was organic pasta and organic mince. Then it was off out to visit the people from the Afon Goch Pub in Trelogan (where my Daddy went to school). They had raised lots and lots of money for my fund and two Ladies, one called Eifiona and one called Norma gave me 2 big cheques to give to Nana & Grandad. The money had been raised by doing quiz nights in the pub and raffles and collections in the village. Plus a large donation was made by Paul Newton from Mainetti in Deeside. We would like to thank everyone that helped raise the money especially: Mush, Pat, Betty, Gary, Peter, Tony, Rhian, Nicky, Paul and Lynne Wilson (who couldn't be there). Also to everyone in the village of Trelogan who supported the fund raise. Thank you very much and I gave everyone a big hug before we left for bed.
Night, night everyone. Love You All. Connah.
PS Nana and Grandad said this was a Great Day. Still a long long way to go but a step in the right direction.
Posted on: 06/07/2007
As you all know we all went down to London for Connah to have several scan tests done. These are the first scans since February. Connah's last treatmnet of Chemotherapy was the first week in March. So we have been nervously awaiting the results of the scans for the last week.
This morning Dr. Gaze phoned from UCLH to say that the scan results showed that the size of Connah's Tumours had reduced and there were more signs of calcification (NB cell death), however there were still signs of the desease being present. This was a tremendous relief to us and I'm sure to everyone who reads Connah's site. We will continue with all of the Positive things that we are doing on a daily basis, Fresh Juicing, Filtered Water, Hands on Healing, Resonent Light Machine, Organic Food and a Positive Attitude to beating this illness.
Thank you all for your support that helps both Connah and Debbie & I to continue fighting this illness.
Love to Everyone from Connah, Debbie & Jimxxxx
Posted on: 04/07/2007
Hello everyone. Well guess what when I woke up in the morning Grandad was home. He had decided not to go away until we had the news about the pictures inside me. Everyone is waiting to hear and Grandad says that they hope to hear something by Friday. Anyway after we had had a cuddle and a play it was time to get ready for Auntie Jenny coming. She brought a new word game with her and we had real good fun doing it. Then it was off to Glan Clwyd Hospital for another hearing test. The ladies there were very good and they made all of the tests good fun and the good news is that they are going to help me get another hearing aid as they think that I need two and one will have Manchester City logo on it, coooool. Then we went shopping to get me some more Organic food as it really helps me keep strong. When we got back I went out playing with Katrina and Daniel for a while before it was dinner time. Then me and Grandad played Ben 10 v Power Rangers in the bath, before bed time.
Thats it for now, Oh forgot to tell you that Me and Katrina did some painting in the kitchen and didn't make half as much mess this time. Night, night everyone. Love you All. Connahxxxxxx
Posted on: 04/07/2007
Hello everybody. Yesterday was another race against time as most days are. We were up nice and early and ready for Auntie Rhian (CLIC Nurse) to visit but she phoned to say that there had been a road accident and she had been stuck in traffic for ages and wouldn't make it. Then Auntie Jenny came and we did some good school work. After she left we all went down to Prestatyn High School to meet six of the girls from Class V7. They had heard about me from the newspaper and people that know Nana and had decided to raise some money to help my appeal. They did bag packing at "Iceland's", a raffle and made and sold cakes all off their own inicitive. So we met all the girls in the liberary and I was very shy as they are all very pretty!!!! Any way they talked with Nana & Grandad for a while and then we all had our picture taken together. Then came the best bit, they all gave me Hug's and Nana told them that we will take them a picture each from the website so there maybe some Kisses too! So a Very Big Thank You to Jade Atherton, Laurie Davies, Shannon Harrison, Alys Davison, Melissa Moore and Lucy Tully.
After that we raced off down to Colwyn Bay to Spec Savers. They had phoned Grandad to say that they had seen my story in the Daily Mirror and that they wanted to help me wear my hearing aid more often so they were going to make me a new hearing aid with my favourite football team logo on. So hopefully you will be able to see Manchester City on my hearing aid in the near future. While we are thinking of football can I say thank you to Julie and Bobby from Gronant for contacting Geoff Henderson and Martin Onuoha who have sent me a signed City shirt and a signed City football (Grandad says that they forgot to ask Sven to sign it, Sven who!). So we then went home and Grandad quickly packed his stuff as he was going back to work for another short trip. So we all had a cuddle and I promised to be good and look after Nana while he was away and he said he would phone every day and possibly bring me back a Nintendo Wii so that I could get some exercise when it is raining out. Uncle Clive came and picked Grandad up and we waved him off. I was upset but know that he will be back soon. So Nana and me played Dinasaures on the carpet until it was time for bed and then off I went.
Night, night everyone. Love You All Connahxxxxx
Posted on: 30/06/2007
Hello everyone. We all came back from London last night after 3 days at UCH. The visit was to get my picture taken inside so that everyone could see what was happening with "my poorly" inside. We went down on the train and there was lots of water up to the tracks in middle of the journey. When we arrived we got settled in and then they took my "OB's (blood presure, temp, wieght and pulse) and that was all okay. Next day I had to have a canular in which I didn't like at all and it caused a lot of upset as I wouldn't let them put the needle in me. So Grandad had one in his hand just to show me that it was okay, but I still didn't want it in so he had to hold me while they did it. I know that he doesn't like doing it but I get really worked up and frightened when I see the needle. Later on they came and gave it a drink, which puts a liquid in my body that shows up in the pictures. I went down with Nana and fell asleep while they were doing the first picture, which was good, but I didn't wake up till late and I had missed my dinner, which was bad.
Next day I had to have two more pictures taken, but first I did some school work with the teacher off the ward, it was a story about a mouse who thought she should do everything wrong to show that she was brave, what a nit! Nana spoke to another lady called Helen whose little boy "Jesson" also has the same as me but has had it for much longer. When I went down for my next picture Nana & Grandad came in with me as I had to lay still for almost one and a half hours. Nana told me stories about "Black Beauty" and the "Three little Pigs", she is good at telling stories. After that it was the last picture and this was the most important one, I don't remember it as I fell asleep. Then we went back upstairs and I had a quick bath while Nana packed and off we went home. On the way back I sat next to a lovely blonde haired young lady called "Katherine" and we played games and watched Scoobie Doo and the Pirates all the way home. Nana and Grandad won't know what was in the pictures until the Dr. speaks to them next week, so I'm sure they will pass on the news.
Night night everyone. Love you All. Connah xxxx
PS Thank you to the Artist Sean Pilling who not only came down and showed me how to paint lovely pictures but has now painted a special picture for my appeal. Its called "Inspirations of the Soul" and there is a picture of it in my photo album. It is for sale and the proceed's of it go entirely to my appeal. Anyone who is interested please send an e-mail to Grandad and he will let you have the details. Also thanks to Pat and Droplets of Colour, (don't forget to check out my links page for my sponsors).
PPS Tom, watch out for those big waves, especially the Mexican ones!
Posted on: 26/06/2007
Hi Everybody. Today has been a really hectic day as we received a telephone call from UCL Hospital moving Connah's appointment for his scans from next Wednesday to tomorrow. We had lots of things planned for this week and have had to rush around and cancel them all. As you have been reading in Connah's Dairy, Connah is at the moment in fabulas health and full of energy, however Connah has not had a scan since February, so no one knows what is happening inside him. These next few days will be the deciding factor in how the next stage of Connah's treatment will proceed. As we have said previously the last stage of the treatment is the "Antibody" treatment which is not available in UK yet. We have to complete several more stages of treatment before we will be close to going for that treatment.
If in the rush of today I have failed to return any of your e-mails please bear with me until our return. I would like to say thank you to Moh'd from the "Picture Framing Center" in Radcliffe for his generous support with Connah's art work. Also to Pat & Charles Senior for their drive and enthusiasum in supporting Connah's Appeal.
I will try and update Connah's Dairy on how we get on from London. Connah is fine and had a good afternoon in school where he got an "Excellent" sticker for being a good boy. He then came home and raced around the garden for an hour before coming in to do some reading with Auntie Jean and Katrina.
Talk to you all soon. Best Regards Debbie, Jim & Connah.
Oh and thanks to Nat, Sara & Pheobie who all bought Connah's pictures. I hope that you enjoy looking at them as much as Connah enjoyed making them.
Posted on: 25/06/2007
Hello everyone. Yesterday was my first proper day playing out with my friends after my line was taken out and what a good time I had. But thats not how the day started up. Nana had a bright idea that we should do some more paintings in the kitchen. So whilst Grandad did the ironing up near the back door, Nana spread newspaper on the floor, then cut holes in a bin bag and put it on over my clothes and then put the 3 canvasas on the floor. We decided to use bright orange paint and this was going to be a hand painting not using brushes. Nana had bought some oil paint to use (can anyone see the major flaw in this plan? 5 year old boy, orange paint, hands, white kitchen, mischievous twinkle in corner of eyes!). It all went to plan and we got the first 2 paintings done and they look rather good (just a quick note to say that all my first four paintings have been sold). Then Nana decided to lean over me to pull over the third canvas, just couldn't resist, stroked my paint filled hand down the side of Nana's hair to give it a bit of color, then my hands were a bit sticky so I wiped them down my trousers, which went well with the green. The next picture was done in record time and whilst waiting to get cleaned up I managed to, lean against the white fridge door, put my hand inadvertantly on Nana's white t-shirt, stand in a blob of paint and walk it across the kitchen floor on my socks and whilst laying across the kitchen work tops with my hands in the kitchen sink, I swished my hands around the white sink which has left a "sunny" lining, even after Nana put bleach on it.!
The paintings do look good though and the kitchen is starting to look normal again, can't say the same for Nana's hair though! So just after we had cleaned up, Auntie Ellen and my Cousin Pheobie popped in for a visit, they brought me a new car and a jigsaw and Pheobie bought one of my paintings for her bedroom. Also they brought lots of donations from up in Stockport, so thank you everyone. Then I took Pheobie out to meet my friends and do some more playing out then it was dinner and a second hot bath for me and off to bed, where I slept like a log! Love you All. Connah xxxx
Posted on: 22/06/2007
Helo everyone. Today I woke up and I had no lines sticking out of my chest. I was so pleased that I went round showing everyone (which upset Nana as I kept pulling down the neck of my t-shirt). Nana says that in a few days time I will be able to have the dressing off and we can see how they have cleaned up my growth. We had lots of shopping to do today as we had no food in and we also had a letter from the hospital in London saying that they will do my scans in 2 weeks time. So it will be back down to London for a few days as I have to have several scans to see what those nasty tumours are up to.
Grandad says to remind everyone that my pictures are now up for sale and that 100% of the price goes towards my appeal and to e-mail him if you want one. They are just keeping the red one for my bedroom. I did some good reading whilst I was away and can now read my new "Chip & Biff" book without any help so it wasn't all play at Euro Disney. Tomorrow I hope to be able to play out with my friends next door as today Nana & Grandad were a bit worried about my dressing. Also today Auntie Jean came round and read me a story whilst she put her nice warm hands on my tummy, she reads good stories!
Time for bed. Night, night everyone. Love You All. Connah xxxx
Posted on: 22/06/2007
Hi Everybody. Just a quick update this morning. We all spent the day at Alder Hey yesterday waiting for a slot for Connah to get his line out. Connah became increasingly grumpy as time went on as we had not had a drink or eatten since leaving home. At 3.30pm he finally went down for the line removed and was back within the hour. The operation went well, the line was removed and the growth that was on his chest was also removed. However Connah did not come round from the anesthetic very well and spent an hour thrashing around the bed screaming and crying. Eventually we managed to calm him down and then we spent several hours going through the process of observation checks before we were finally allowed home. So we arrived home late last night and Connah has had a good sleep and is now watching "Power Rangers" after telling us that the "Fairies" had been and removed his line. We have found throughout this whole experience that All of the Children that we meet have a great capacity for erasing most of the bad stuff that happens to them and just moving on with what ever the next holds for them with a smile, a cuddle and a bit of TV!
Thank you all for your continued support. Debbie, Jim & Connah
Posted on: 20/06/2007
Hello everyone. Arrived back home at 4.10pm tonight, had to carry Nana & Grandad through the door as they were "pooped". Whilst I was away we had a day shopping as a break in between the two parks. Unfortunately Grandad saw an advert for a "Designer Shopping Village" 5 minutes from the hotel, so Nana was persuded to go and guess what? Nana saw some shops she really liked, amazing! I did get a new pair of smart trainers though.
Then next day we all went back to the other Disney Park and we hadn't been there 5 minutes and I was in trouble, guess who with? Pluto. Pluto was looking the other way and I wanted my photo taken with him, so Grandad said "Go up and pull his tale". So I did and he turned round and tried to bite me and really frightened me. Grandad got a good photo though, but I told him "you told me to pull his tale and that got me in trouble" and Grandad said "Well you never usually do what I tell you", as if! Any way we had another Great Day going round seeing all of the characters and going on lots of the rides. We even went on a "Buzz Light Year" ride and shot up loads of Aliens too.
This morning was a real rush as we had to get a bus to the train station and then on the train to the airport to catch the plane. Grandad used up his "Air Miles" from when he was working so that we almost got the flights for free. And guess what when we came to land at Manchester it was raining again, just like when we left! So I am having my bath and then my dressing done for nearly the last time, as in the morning we are off to Alder Hey to have my line out. I know that I will have to have it back in in the future but it will get rid of this infection that I have had for sooooooo long. So nothing after breakfast in the morning as my operation is in the afternoon. Grandad will let you all know tomorrow how it went (Grandad likes to share the "pre-med" medicine with me as it makes us both giggle and fall about but don't tell Nana).
Night, night everyone. Love You All. Connahxxxxxx
PS The last of the pictures of the paintings is now on the site. We have decided to keep the "Red&Yellow" picture for ourselves. The pictures are £30 + postage & packaging. I don't know a fair way to do this so the first 3 e-mails that arrive between 8am & 9am Friday morning the 22nd for the 3 paintings will get them. I will announce the winners on the ticker tape. There will be more paintings in the future for anyone who is not lucky this time. Please e-mail firstname.lastname@example.org
Best Regards, Jim
Posted on: 18/06/2007
Hello everyone. Nana & Grandad have taken me away to Euro Disney for a couple of days before I go into Alder Hey to have my line removed. I had a smashing time yesterday Disney Studio's where I saw Lilo & Stitch and Mickey and all of the others. We also went on a Spaceship which was blowing up and Lightening McQueen race cars. We had a great time except in the afternoon when it poured down with rain. Grandad had to pick me up and carry me around for a while as I was spashing in all of the puddles. My infection was very messie in the evening when Nana cleaned it up, she said that this was because I had been running around all day. Any way it will be out for a while on Thursday and that should clean up the infection.
Grandad has some more good photo's to put on the site when I come home and he says that the pictures that I painted are at home waiting to be sold when we arrive back. So fingers on buzzers!
Bye from Euro Disney. Love you All. Connahxxxxx
Posted on: 13/06/2007
Hello everyone. Yesterday was a really looooong day. We were all up early and made sandwhiches and packed bags, Grandad packed my little DVD player so that I wouldn't be board on the train and then we picked up Auntie Heather and off down to the train station we all went. The train was delayed so I played "hide & seek" on the platform for a while. Any way we got on the train and it was almost 3 hours down to London. The only exciting bit was when Grandad took me to the toilet, now they have electric doors which slide open when you hit the button, but Grandad says your not supposed to do it when your trousers are on the floor and your wiping your bottom! (Well Virgin should make their rules a bit more child friendly thats all I can say). Also Grandad started to panic when I was trying to kick this big red target on the bottomof the wall. Just what is the "Emergency Stop Button" anyway?
We got to London and it was only a short walk to University Colleage Hospital where we were going to meet a Doctor who was going to tell Nana & Grandad all about radiation treatement. When we arrived there I went off with a Lady called Saskia to the play area and we had good fun playing games for nearly 2 hours. Then Nana, Auntie Heather & Grandad came back (see details below of what the Dr. said). We then went off and had a walk around and then took Auntie Heather to a different train sation as she was staying with her relations in London for a few days. I fell asleep and Grandad had to carry me round until we found a taxi and then it was back to the station to catch the train home. The journey was really long as the train had a problem and we didn't get home until almost midnight. I went straight to bed as we had to be up early again this time to go and see my Lady Dr. at Clatterbridge to tell her what had happened in London. Tomorrow is the school sports, but Nana says the weather is not going to be nice so maybe I won't be able to win any medals this year. Night, night. Love you all. Connah xxxxx
Details of discussion with Dr. Gaze Radiation Consultant at ULC.
Dr. Gaze discussed all aspects of radiation treatment, the process, possible side effects and potential outcome. The process is that Connah would have a radioactive source called MIBG inserted into his body along with a Chemotherapy drug called Topotecan. The MIBG is attracted to the cancer cells, when it attaches itself to the cells then the Topotecan creates an opening and the radioactive source goes in and destroys the cells. Possible side effects can be nasty and can result in the worst possible outcome. However most children come through the process with little or no noticable side effects. The process involves Connah being isolated for up to 4 weeks in a special hospital room, with intially very limited interaction with anyone. He will of course be monitored at all times and have nursing staff on hand. Once the radiation has reduced to a reasonable amount in Connah's system we would be allowed to go in and be with him for periods of time, but not sleep in the same room. Potential outcome. The protocol is the next step in a long treatment, there is no quick fix where you miss out sections and jump straight to the Anti-body treatement. The prognosis is this: Approximately 100 children a year get this disease in UK, out of the 100, on average 40 don't make it through all of the treatment out of the remaining 60 20% survive long term. There are markers which identify those with a better chance of survival from the rest. Connah has all of the "bad markers" except for one. The Doctor informed us however that there was no positive way to identify who will be in the "survivor" group. However at this moment in time Connah is astounding All of the Doctors with how well he is doing (this can all change in the blink of an eye) and we all know that.
Next Step is to have Connah's line removed as he has had an infection on his chest for the passed 12 weeks and the Doctors feel that the only way to get rid of it now is to remove the line and then re-insert it at a different location at a later date. Next, go back to London and have a detailed scan called a PET Scan done which will identify every single place in Connah's body where the disease exists. Once this has been done we will discuss which is the best option for treatemnt at this stage.
Debbie & Jim
Posted on: 12/06/2007
Hello everyone. Well not a good day. First off I got in trouble for not eatting my breakfast quick enough (well I think 1 hour for a bowl of cornflakes and a drink is about average!), but I made up for it by doing good work for Auntie Jenny. Then I ate my lunch quick (Organic jam sandwhich) as I wanted to go and see my friends at school. Nana picked me and my friend Kyle up from school and then we all went into Prestatyn and me and Grandad had our hair cut, it didn't take long as I only needed a trim and Grandad doesn't have that much to take off any more, the lady just stands behind him making "clipping" noises with the scissors! Then we went and played on the park and I showed Kyle how to run up and down the "skateboard" slopes without falling over.
When we went home Nana made dinner while me and Kyle played on the trampoline. Then we argued over who could play on the scooter. Grandad said we could take turns, so I had the scooter and Kyle chased me on my bike, so guess who fell off and cut his leg open? Oh man, it was me! Grandad picked me up and took me in the kitchen, cleaned it off and put a plaster on, which lasted about 4 minutes before it was on the floor and I was back on the trampoline. Then we all sat down for dinner on the decking as it was a warm night. Kyle finished first and went off to play, as usual I was a bit slow eatting, so was in a rush to catch up with Kyle when I finally was allowed to get up from the table. So guess what? When I went running over to catch up with Kyle "Oh Man" I fell over and scraped all down my other leg. Grandad leaped over the side of the decking, picked me up and rushed me into the house to patch me up again. Nana says that she is going to put up the insurance money on Grandad if he keeps leaping around like a "looney" everytime I fall over.
Any way we are all off on a train journey in the morning to see a man in another hospital. I have heard Nana & Grandad talking about a "lead lined room" whatever that is and they don't seem happy about it. They also want someone to look at my poorly chest as its looking worse and worse, but Nana cleans it up every day and is trying her best to get it better. Night, night everyone. Will let you know what happens when I get home. Love You All. Connah xxxx
PS Thank you to Eliane and the Ladies from the Prestatyn Weight Watchers Club who raised a lot of money doing a sponsored walk. Grandad will put your photo on the site as soon as we get this "glitch" with the photo page sorted out.
Posted on: 08/06/2007
Hello everyone. Last night I went down to the Bikers club and sat on a couple of really smart motorbikes, but they wouldn't let me ride one around, but it was good fun and then I went round telling Grandad all of the letters on the number plates. Today Auntie Jenny came and I did very good work again, I almost read all of "Cheeky Monkey" book to Grandad and he was very pleased. Auntie Jenny saw that "NANA" was still written on the blackboard from when I wrote it the other day, so she showed me how to change it into another word, when Nana came in from the garden she saw that I had changed it into "banana", she thought it was very funny. After my organic vegatable soup I went off to school and did some more work and then we had to dash into Prestatyn to get some new clothes for Auntie Gills Wedding tomorrow. Grandad knows how much I like looking at clothes so he took me for an icecream whilst Nana looked.
Auntie Pat is coming at weekend with the pictures that I painted. So Grandad will put the details of how you can buy one on the website. If we get a good response I will do some more and mess up Nana's kitchen floor again. Nana did my dressing again tonight and it is still very yukie and was bleeding a bit so Grandad said that if its not looking better in the morning we will be off to the hospital again, so perhaps there will be no gym day tomorrow "rats"!
Dave is coming on Sunday to sort out the problem of putting pictures on my website, so look out for loads more photo's on Sunday/Monday.
Night, night. Love You All. Connahxxxx
Posted on: 06/06/2007
Hello everyone. Well another full day of interesting stuff. This morning after breakfast (organic cornflakes), Nana did my dressing and just had time to wash and dress before Auntie Jenny arrived for School. We did some reading and jigsaw's and writting on the blackboard, Auntie Jenny says that I can now identify 21 different words when they are written down. So I told her that I wanted a go with the chalk and I wrote Nana on the board and its not a word that we have been practicing, Auntie Jenny and Nana were really pleased and Nana gave me a big hug and kiss. I may be starting on some new reading books shortly as I have done really well with "Kipper & Biff".
After that it was off to school to se my pals and we made "ladybirds" out of plasticine. When Grandad picked me up I talked him into taking me down to the park. When we got there my pals were playing on the skateboard area, so we had great fun running up and down the ramps and jumping off the top. Even Grandad had a go. Then we went home and had a drink and got changed into my shorts as the weather is still nice. Grandad and me played football in the garden, I let him have a few kicks as he his a bit slow now and then we played chase on the drive, he didn't catch me much, but then again I was on my scooter!
Uncle Steve was helping Nana in the garden with her plants, me and Grandad stay well clear of that though, too messy for us. Auntie Pam & Uncle Ray came round and Nana made juice in the machine and we all had some. Then it was Beef stew for dinner and into my bath before having my dressing done. No change there it is still yukie! Just before I went to bed Auntie Paulina & Uncle Clive came round, which just about saved me from a telling off as I was messing Grandad around in the bath and kicking him when he was trying to dry my feet, well it is ticklish!
Night, night. Love You All. Connahxxxx
Posted on: 04/06/2007
Hello everyone. Well we are back home after having a Fabulas time at Pontins. I met some really nice people there and had a smashing time with the other kids. Yesterday Grandad took Ethan, Reece and me down the park, we raced around chasing each other and climbing on all the stuff and then we went and drove cars and kept bumping into each other, then Nana came and we had hot dogs and drinks and then went off to Jungle Jims and did more chasing each other. We had a litle rest of playing on the computor games and then it was back to the rooms and we played football until some one kicked the ball up on the roof and thats when the game ended. After that we all went to the Gronant Inn for late lunch and then back to the room and that was it for the day as as soon as I sat on the sofa my eyes closed and I didn't wake up till this morning. Nana & Grandad were a bit miffed as they wanted to go down to the club and talk to all of the other parents. This morning we all met up ofr breakfast and said our "Goodbyes" till next time. When we got home Auntie Rhian phoned and asked if we could go to Glan Clwyd to check my line again. So I went into school for a couple of hours and then it was off to the hospital. They took some blood and had a look at my chest and said it was coming along okay but they said to keep up with the cream. So I got home in time to have a play out with the kids next door and then we went down "Happies" for dinner as Nana had not got anything out. When we came back I had my bath and then one more clean of my chest and cream on, I had a quick moan as the area around my dressing is getting very sore but Grandad put some vasiline on it for me.
Thanks for all of the nice messages. Night, night. Love you All. Connah xxx
PS. To everyone who leaves a message for Connah with information we do either follow it up or we are already doing something in that direction. All of the hospitals that we contact about future treatment for Connah want to see his complete medical history before they will discuss treatment. As you can imagine Connah's notes are extensive, we are trying to have them transfered onto CD to reduce the postage and time delay. Also for families kind enough to leave a message about visits or trips out, especially to see City we will contact you at some stage in the future so please don't think that we ignored your message. Thank you all.
Debbie & Jim
Posted on: 02/06/2007
Hello everyone. We are away camping at the moment. Well its not camping really, it's just that its called "Pontins Holiday Camp" and my friend Ryan goes camping and now I'm doing it too. It has been organised by a lady called Chris Edwards, who has been organising holidays for sick children for the last 7 years. So thank you Chris. So what have I been up to, well I was driving a big truck around a race course 9minature) and playing darts and crazy golf and spending lots of Grandad's money in the amusements, I have also met loads of new friends and had a great time playing football. Had my photo taken with Mr. Croc! Stayed up late and did disco dancing and Grandad went and saw Becci absail out of the Ryhl Sky Tower to raise money for my appeal. Thanks Becci, Simon's turn next year!
We are coming home tomorrow as my line is playing me up still and the dressings keep peeling off with all the sweating that I'm doing. Plus its the "S" word on Monday, School!
Night, night. Love You All. Connahxxxx
PS Special thanks to Sharon, Deeside Fire Brigade & Lynne.
Posted on: 31/05/2007
Hello everyone. This morning when I got up Nana and Grandad had phoned the hospital to tell them that I had a problem with my line and would be coming in today to see the Doctor. So we went off to Glan Clwyd and the Doctor had a look at my chest and she was not happy as it still has puss coming out after 10 weeks on antibiotics. So they talked to the Doctor at Alder Hey whilst I made a mess in the play room and they have given Nana some special cream to put on it. This is the last resort and if it dosen't work they will have to take my line out and put a new one in. As I spent most of the day at hospital Grandad took me to "kids club" so that I could play with my friends for a while. Then I came home and did really good reading with Nana & Grandad. Grandad was really surprised how well I did. Then right at the end of the day before I had my dressing changed and had my bath for bed and after I had eatten all my (Organic) lamb stew we opened the parcel from "Jetix" kids tv station and it was full of all goodies from Power Rangers & Spiderman, thanks Alana. Thats it for tonight.
Love You All. Night night. Love Connah xxxx
PS Grandad is still having problems putting my paintings on the website. However when he has them on they will be up for sale. They are framed and we will post them to you, as soon as they are up Grandad will let everyone know how you can buy one. Don't forget that we have lots and lots of T-Shirts too!
Posted on: 30/05/2007
Hello everyone. I had to stay up late but it was worth it as Grandad came home last night. Nana was just doing my dressing, which is still very "yukie" and Grandad turned up. I stayed up a while and then had my bath and off to bed. When I woke up this morning Grandad was still here. So we had breakfast watching cartoons and then I had to get into my Fire Man's suit to have my picture taken by a lady from the Chronicle, she was very nice and took some good photo's. Nana said that I was playing up as Grandad was there, who me, never! Then this afternoon I went to kids club with my friends for a while and then came home and played football in the garden with Grandad until it started to rain. Tonight Nana did my dressing and it still looks a mess, so I'm going to Glan Clywd tomorrow so that the Doctor can have a look at it.
Pat who came to visit a couple of weeks ago and helped me do the paintings has now sent the photo's of the framed pictures, but Grandad is having a little trouble getting them onto the site, but they will be on soon. Thank you Pat and "Droplets of Colour".
Night, night. Love You All. Connah xxxxxx
Posted on: 27/05/2007
Hello Everyone, I spoke to Grandad on the phone this morning and told him "2 more sleeps and you will be home". He said Great and then we can all have some fun. I told him that I had a plaster on my arm as I had slipped off my climbing frame and cut my elbow, but it wasn't too bad and Nana was looking after it. Nana told Grandad that I wasn't eatting my breakfast and I told her to "shsssss", which was good as I am practicing my "sh" sound for Auntie Jenny. Later on I am off down to the village where everyone is rehearsing for the "Panto".Thanks to everyone who is sending me really nice messages and kind thoughts. With all your good thoughts Nana says that I can't help but get better soon.
Love you All
Posted on: 23/05/2007
When I got up this morning I must have had my naughty head on because I;ve managed to get into trouble all day. I threw a tantrum because I was told off and nana got so cross with me that I really thought "this is it, I'm in big trouble now". Auntie Jenny was there when I was really naughty and when I calmed down she made me write a letter to say sorry to nana for being so naughty. I didn't get any stars or stickers today. Later on I was naughty again because I didn't want to go shopping with nana and she said I had to go. She said it was time I learned who was boss and when I was really naughty she said "that's it Connah Broom, you are not going out to play with your friends today, You will stay in the house because you have been naughty all day. And that is that". Nana made sure that I didn't go out to play when the boys called for me and I thought I'd better not argue again or she might stop me going out tomorrow as well.
I forgot to tell you about yesterday. I had lessons with Auntie Jenny and I was very good indeed. She was very pleased with me especially when I remembered my sh ch pr ee it and sw sounds. I went to school in the afternoon and played with my friends. A man called Kevin Wright came to see me and nana today. His son is called Bobby and he is the same age as me and also has the same type of cancer. Kevin has put Bobby on a really healthy organic diet and so far Bobby has been able to escape having surgery. Bobby is doing really well and nana is keen for me to try eating and drinking the same things as Bobby because it might help me get better. Some of the foods are lovely but some I'm not too sure about. I can be quite fussy with my food so nana might have a few problems convincing me to eat some of the things. Nana will try anything that will help me get better so I'll have to try eating and drinking these new things. Anything is better than going back to hospital.
Time for bath and bed now
Lots of love
Posted on: 21/05/2007
Today started a little differently as I don't normally go to school on Monday's. However, it was my class photograph today and I had to be up and ready for school by 10.30 am. I had to be in my school uniform and had to be with all my friends to have my photo taken. When the photographer said " smile" I made sure that I had a nice smile on my face. After the school photo I had to go home and my friends went out to play. Auntie Jenny came to see me and I had to do lots of writing for her. I surprised nana because I wrote "meet" on my blackboard - without any help and then told her what it said. Nana was so surprised and excited that she gave me a great big hug. It was a really big hug ! I didn't tell her that Auntie Jenny and I had been learning the ee sound and that I had been practising writing meet, sweet, feet, sleep and sweep in my book while she was busy talking on the telephone in the other room. Don't tell her will you because she was so excited ! I showed Auntie Jenny my magic coin from the tooth fairy. I told her "if you rub the magic coin you might get lucky and be able to wobble a tooth out and get a magic coin from the tooth fairy" but Auntie Jenny said it only works if you are little. She said " The magic is not the same for grownups."
If you want to see what I look like with my hair growing check out my latest photos in the photo section. Nana says I'm really handsome but I think she may be a touch biased !
Lots of love
Posted on: 20/05/2007
I've just had a lovely weekend. It started really well on Saturday morning as I woke up to discover the tooth fairy had been and left me a magic coin. I remembered what happened to my magic coin last week (I lost it for a few days, found it and then dropped it down the side of the settee) so this week I've been extra careful and put in on the coffee table. I keep checking that its still there and it is. The trouble is I want to play with it ( it is a magic coin after all) but nana says "don't blame me it you lose it again, Connah" so I'm being very careful and putting it back on the coffee table for safe keeping. I went with the art club to the beach on Saturday afternoon for a treasure hunt. The treasure was pebbles, shells and other interesting things and I found loads. The rain came down while we were there and I got quite wet. I got even more wet when I stamped in puddles and the sea water went over my wellies. My trousers and socks were wet through but I was happy. Today I've been to watch rehearsals for the Aladdin rehearsal and had great fun running on and off the stage, singing and dancing. I think I might be an actor or a singer when I grow up unless of course I decide to be a fireman. I got really tired this afternoon and fell asleep on the sofa for a few hours. Problem is that now I've woken up I'll be full of energy (and mischief) until well after my normal bedtime.
See you all tomorrow
Lots of love
Posted on: 18/05/2007
I'm so excited because another tooth has just fallen out. Well maybe it did have a little help from me playing with it and wiggling it around. Its another tooth at the bottom of my mouth next to the one I lost last week. I'm going to leave it under my pillow tonight for the tooth fairy. If anyone sees the tooth fairy can you make sure she knows to come to Gronant tonight plese. If she comes with the magic coin I'm going to make sure I don't lose it again. The last one got lost, then I found it and then it fell down the side of the settee. Grandad is going to get it out for me later on. My other news is that I didn't go to school today because my little cold is still making my nose run and its also making me cough rather a lot. Nana says I'm barking - but I'm not a dog - I'm a little boy so I'm sure what she means. I've been playing with my toys all day and having some rest and doing some reading with nana. I am not sleeping very well at the moment. The doctors have given me some special sleeping medicine but it only works for a few hours. I keep on waking up in the middle of the night and it takes me ages to go back to sleep again. If anyone has got any good ideas on helping me sleep please leave a message for my nana because I keep her awake at night as well.
Lots of love (especially to the tooth fairy)
Posted on: 17/05/2007
I woke up this morning and my nose was still a bit runny. I thought it would be better by now but it looks as though I'll get through a few more hankies before the end of the day. Even though I have a cold I don't feel ill its just a nuisance having to carry a hankie in my pocket. I like to use grandad's big "mansize" tissues because they don't fall apart so easily. My power ranger line is still very messy and nana has to clean it out every day. I really don't like the line being messed with because it does hurt a lot when people touch it but nana says its important to keep it clean. Auntie Rhian, my special nurse will be coming tomorrow to give it a good clean and maybe take some more swabs. Auntie Jenny came to teach me today and I did some really neat writing so she gave me a round, gold sticker with "clever me" written on it. As part of my speech therapy I have to learn to say lots of different sounds clearly. The sounds this week are sh, ch, ee, it and pr. I like the sh sound as its nice and easy but I sometimes forget the ch sound so Aunty Jenny said make it sound like a train going ch ch ch ch out of the station. Now its easy to remember. I went to school in the afternoon and had lots of fun with all my friends. Later on I saw Jean is trying to help me get better with her special "healing hands". I don't know anything about healing powers but I love the attention - so thankyou Jean. I want to say a special thankyou to everyone who has left a message on my site. I love listening to nana reading the messages. Nana and grandad also want to say thankyou to everyone who has helped us with raising money and to all the people who are kind enough to spend time sending messages of support. Thankyou everyone. Lots of love, Connah
Posted on: 16/05/2007
I've had a bit of a runny nose for a few days now but nana says its definitely a headcold and nothing more serious. Its making me a little grumpy but most of the time it doesn't bother me too much. I'm on more antibiotics at the moment because my power rangers in my chest (central lines) have become infected and look quite messy. They don't hurt most of the time but if someone accidentally touches me near them then it does hurt quite a lot. I was playing with my daddy today (because its his day off) and he forgot about my power rangers and grabbed me when we were messing around and that did hurt a lot. Daddy and I have been playing with lots of my toys all day (because I don't go to school on Wednesday's) and I really enjoyed that. Daddy and I also went to B and Q with nana to help her choose some plants for the garden. I got into a bit of mischief because I kept going off and grabbing things that interested me and nana had to say "no Connah" more than once. Lots of love to you all, Connah xxxx
Posted on: 15/05/2007
As you can see there have been a few changes to my site but everything else will be just the same. Please leave a message for me if you like the new site because it would be nice to show Dave (who designed it especially for me) how much everyone likes it. Dave has put in a security system to try and stop all those naughty people leaving messages that are not nice for a little boy to read. When you leave a message for me you can choose to put one of my favourite cartoon characters next to your message. I love Spiderman and Ben10 so your message will make me smile if I see the cartoon there as well as a cheerful message. Yesterday I had some lessons with Auntie Jenny and I enjoyed writing on the blackboard and she gave me a gold sticker for my writing in my book. We did some reading and she said I'm doing really well. I don't go to school on Monday's so it was a little lonely in the afternoon without all my friends to play with. The weather was quite good so nana and I did lots of gardening and I had lots of time to play on my trampoline and on my slide. Today (Tuesday) I was a really good boy for Aunty Jenny and we started a new reading book called "Push". Its all about when dad's car got stuck in the mud and everyone tried to push it out. It was too heavy for them to push out so the tractor had to pull them out and they all fell over in the mud. Because its Tuesday I went to school in the afternoon and had lots of fun playing with all my friends.
Lots of love, Connah
Posted on: 14/05/2007
I've just had a brilliant weekend. It started really well on Saturday because nana took me to the kids gym club at the Lyons Den for a workout.
I love all the gym activities and all the games we play at the club.
I thought I was going home for a rest, and a play in the garden, in the afternoon but nana had other plans for me. She took me to the Family Centre at Gronant where lots of my friends were having an art class with Carol. I joined in, of course, and was soon up to my elbows modelling dough or clay.
It was good fun and I made a fish which looked very nice. Later on nana and I went to see Auntie Pam and Uncle Ray and I ended up eating too many digestive biscuits. Uncle Ray said "help yourself Connah" and so I did.
Nana was a little cross with me because I was so full up that I didn't eat my tea properly.
On Sunday we had four visitors from Manchester. Their names were Pat, Charles, Sean and Dorothy. They were excellent fun to be with and they helped me to do art work using proper acrylic paints and proper canvas to work on. I used brushes and I used my hands which was even better. They took lots of photos of me working on my art and then said that they would have my art work properly framed for me. Some of my artwork wil be sold to raise funds for my American treatment.
So if you want to collect some original, first edition artwork by the newest Welsh artist, Mr Connah Broom, let me know through the messages on this site.
I really enjoyed being with Pat, Sean, Charles and Dorothy because they played lots of games with me and then we all went out for a nice meal.
This weekend I also got some Spiderman stickers, and a Power Ranger balloon in purple, blue, red and yellow colours.
Nana and I went to see the rehearsals for the Aladdin Pantomine later in the afternoon.
Posted on: 14/05/2007
I was so excited when I woke up this morning and found that the tooth fairy had been to see me in the night and left me a magic coin. I played with the magic coin for quite a long time and then I put it somewhere very safe so that I wouldn't loose it.
Only one problem though ! The somewhere safe was so safe that the magic coin is still there because I can't remember where the safe place was. I've looked in lots of places but I can't seem to find it. Nana helped me look but she couldn't find it either.
She said "never mind Connah it will turn up when we stop looking for it", so we stopped looking for it but guess what ? It still hasn't turned up. Maybe I'll find it tomorrow.
I had a really good day again today because I did some maths work with nana and I read to her. We played the sentence making game that Auntie Jenny had made for me to use and I went to school with my friends in the afternoon. Tonight I will get the chance to wear another pair of my new pyjamas so even bath and bed time will be something to look forward to.
Tomorrow's looking good already because nana said we should have time to go to the gym at the Lyons Den.
Lots of love Connah
Posted on: 11/05/2007
Today did not start very well for me as my special nurse Auntie Rhian had to come and check out my central line as its going all scabby and not very nice.
She had to clean it (which was painful) and then she had to put some special liquid on it to kill the germs. I don't know about killing germs but it felt like it was going to kill me for a few moments. I only cried for a little while and then forgot about it.
I did some really neat writing and some good reading for Auntie Jenny and she said she was very proud of me. She put a very big gold star and two smiley faces in my writing book. I showed my nana and my daddy how to write cat on the blackboard without any help at all and they both gave me a very big hug.
I went to school in the afternoon and really enjoyed playing with all my friends but something very special happened to me while I was reading my book to Mrs Barratt. My tooth was very wobbly and before I knew it the tooth was falling out of my mouth.
I was very excited and wanted to show everyone what had happened. When I got home I showed my gappy mouth to my nana and told my grandad all about how it had happened. I've put the tooth in an envelop and I've put it under my pillow for the magic tooth fairy to come and collect it tonight. If anyone knows where the tooth fairy is please can they tell her to come to Gronant tonight ?
Thankyou. Speak to you all again tomorrow Lots of love Connah
Posted on: 11/05/2007
Today nana and I got up early and sorted out a lovely picnic because we planned to go to Colwyn Bay Mountain Zoo for a visit.
We didn't get to the zoo because the weather forecast was pretty bad and we didn't want to be walking around in the rain. Nana said "never mind we can go one day next week when the sun is shinning".
We took the picnic down to Rhyl seafront and had a lovely treat eating our sandwiches and yoghurt and fruit and watching the sea gulls play.
After this we went to buy me some new clothes because I keep on growing too big for my other ones. I chose some power ranger socks, some new trousers, some power ranger shirts and some orange ninja turtle pyjamas.
I can't wait to have my bath and go to bed tonight so that I can wear the new pyjamas.
Tomorrow is a very busy day for me because Auntie Jenny comes to teach me in the morning and I'm off to school with my friends in the afternoon. Good night everyone, love Connah
Posted on: 08/05/2007
I was so busy yesterday that I didn't have the chance to tell anyone what to write in my diary. Its a little late but here is my news for Monday.
I went to Prestatyn to meet some really nice ladies who were part of a Weight Watchers Slimming club. They decided to do a sponsored walk to help raise funds for my treatment. I think I really surprise people when they meet me for the first time because they think that I'm going to be a really frail, poorly boy sitting quietly in a wheelchair.
The only clues to my illness are my lack of hair (and that's growing back again) and the power rangers (central lines) in my chest. Apart from that I seem to be a normal, healthy boy because I am very active.
Nana always says that I have a really good skin colour but I'm not sure what she means by that. I love to run around and play just like all my friends. I'm as cheeky and mischievous as all the other five year old boys in my class. I often get into trouble, get told off and sometimes have to sit on the "naughty" chair for a while.
The main trouble I get into trouble for is "being cheeky" and having "an attitude". I'm sometimes very good though, especially when my favourite programmes are on the telly because I know if I'm naughty the telly stays off.
See you all later Love Connah
Posted on: 07/05/2007
Hello everyone, I've had a really busy weekend and I've only just had chance to tell you about it. Saturday was a brilliant day as I got to see my fireman friends at Prestatyn Fire Station.
The lads (and their wives and girlfriends) did a sponsered cycle race to raise some more money for my treatment. I went down to Prestatyn Fire Station with my nana to wave them all off and then we followed them for some of the way in the car. I kept on cheering them on whenever I saw them.
The surprising thing was the ladies won the cycle race because they returned to the firestation way ahead of the lads. It turned out the lads had stopped at the pub for a quick one so that held them up for quite a long time. Nana let me stay for a while with my fireman friends before it was time to go home for dinner, bath and bed.
Sunday was also a lovely day because three Rugby teams (Rhyl, Wrexham and Rugby) had matches to raise money for my appeal. I went to watch the matches and had a great time running after the ball whenever it left the pitch. Nana got tired out just watching me.
At the end of the matches it was my job to present to shield to the winning team which was the Rugby team.
After that nana decided she didn't have the energy to cook tea so we went to the Gronant Inn and had a special Sunday dinner. Grandad says a very big thankyou to everyone at the Prestatyn Fire Station and also to all the players in the three Rugby teams for giving their time and money to raise funds especially for me. Thankyou everybody Lots of love Connah
Posted on: 05/05/2007
Hello, Guess who was a good boy for Auntie Jenny today ? I did it, I managed to be very good three times for Auntie Jenny and grandad says that's called a hat trick (whatever that means).
I got a special gold sticker that said "fantastic" because I did some really neat writing in my red book. I have a new reading book called "Headache" and its all about Kipper, Chip, Biff and Dad making lots of noise because they are playing musical instruments. They are so noisy that mum gets a headache. Nana says she thinks this story is all about me and my friends.
I've had another accident and managed to get a sore toe, but nana says she's not surprised as she saw me climbing trees yesterday and said I was lucky I didn't fall down and hurt myself a lot more. I've had a great time at school playing with my friends but nana says it's Saturday tomorrow so there is no school.
My nana doesn't believe in little boys having nothing to do so she has got something very special and interesting for me to do tomorrow. Its not the gym (shame because I do like going to the Lyons Den for my workout) but it involves firemen ! I love the firemen so its looking like I'm off for more fun tomorrow.
Lots of love to you all Connah
Posted on: 04/05/2007
Hello everyone, It's been a busy few days in the Broom house so the diary has been a little neglected.
I went to Great Ormond Street Hospital in London on Tuesday with my nana and daddy, Its a long way from Gronant to London so nana left the car at home and we went on a big train. The journey was quite exciting at first but I did get a bit bored as well.
Nana took some books for me to read and some little toys to play with. When we got to the hospital nana and daddy went to talk to the special surgeon and I went to a playroom to have some fun. I found a new toy there called Robin (its Batman's friend) so I played with it quite happily.
After a while the special surgeon told nana and daddy that he wanted to meet me - so he came to the playroom to see me. He told nana and daddy that he thought I looked so healthy and was so full of energy that I was "marvellous". Nana was really pleased at that and said prehaps its because of organic food and fruit juices. I was so glad when I realised that we didn't have to stay in the hospital (as you know I'm not a fan of hospital!).
I was really pleased when it was time to go and catch the train home again. I don't remember all the journey home so I must have been really tired and fallen asleep !
I've been having more lessons with Auntie Jenny. I was able to spell and write the word cat all by myself - Auntie Jenny was really pleased and gave me a gold sticker with "superstar" on it. I also did some nice tracing and she drew two smiley faces at the bottom of my work. I've been to school in the afternoons with my friends.
I love dressing up in my school uniform and going to class with everyone else. I did fall and graze my elbow and it was bleeding a little bit so nana put a plaster on it. She says I'm a brave boy for not crying.
Time for my bath and bed Speak to you all tomorrow Lots of love Connah
Posted on: 01/05/2007
Hello everyone, Today has been a lovely day for me because I've been able to help nana tidy the house, and then managed to mess it up again. I've had some fun playing with my friends in the park and invited my friend Jack over to my house for tea.
Daddy is home from work early and will be able to put me to bed tonight. Tomorrow is going to be a very, very long day for me because I'm going to catch the big train all the way to London. We are going to visit a very important, clever doctor in Great Ormond Street Hospital. He will be telling nana and daddy all about the big operation I will have to have.
I've been told that there is a playroom for me to use because I don't really like listening to grownups talking - I'd much rather play with toys. Tomorrow will be a very long day for me so I'll probably fall asleep on the train on the way home. Speak to you all soon
Lots of love Connah
Posted on: 30/04/2007
I woke up this morning and just knew that nana would have something planned for me to do.
First it was one of my favourite jobs, helping to put the washing on the line. This job usually belongs to grandad and me because we can't mess it up too much.
After that, we had lots of gardening to do which I also love to help with. I had a surprise later in the afternoon as we went to start rehearsing for the Aladdin pantomine.
There was some singing and dancing which was fun to watch. Its been another busy day but Nana says nothing seems to tire me out. Its time for bed so goodnight everyone Lots of love Connah
Posted on: 29/04/2007
Hurray ! Its Saturday and I was feeling very well so I went to the Kids Gym session at the Lyons Den.
Auntie Jenny did the Kids workout with me so that nana was able to have a proper workout downstairs. I love the gym because there are lots of other children there and we play all sorts of games.
My favourite is the one where we have a big yellow dice and each child has a turn at throwing it. The number on the dice tells Phil the teacher what activity everyone has to do - things like sit ups, frog jumps, race around the track and spotty dog jumps.
Phil the gym teacher is very nice and I like to stand near him and copy what he does. I don't think he's used to having a little shadow like me around. We played space hopper races and games like sticky fingers. It was great fun and I was certainly puffed out by the time I finished.
The excitment didn't end there though because later on I went to a lovely barbeque with some of my friends and played in the sunshine with them.
Now I wonder what my nana has planned for me tomorrow ?
Posted on: 28/04/2007
You are not going to believe this but I've managed another day of being very good and not getting into too much trouble.
My daddy did some reading with me this morning before Auntie Jenny came to give me my lesson. I did some good writing again so she put a big round gold sticker in my book which said "clever clogs", We read some of the new books she brought from the library service.
The one I liked the best was called "Cheeky Monkey". I liked it so much I asked Auntie Jenny to read it twice.
After school I went to see a really nice lady called Anna at the "Greenacres" Caravan site who had three nice envelopes for me. The money was from some fundraising by three different groups of people. Crofts club had done three bingo nights for my appeal, Mrs Harris from the Knick Knack shop had done a raffle for me and the store staff of the Beachcomber bar had also done a collection. A very big thankyou to everyone who is helping my nana and grandad to raise the money to send me for treatment.
I went to see my Auntie Heather and she gave me three big chocolate biscuits to eat and after that I still had time to play with my friends in the park. I had such a busy day I was very tired and fell asleep at the dinner table. Nana had to undress me and put me to bed because I was just so tired.
Speak to you all tomorrow Lots of love Connah
Posted on: 27/04/2007
I was up bright and early today and Grandad reminded me of how good I was yesterday so I thought maybe I can manage another good day today.
Auntie Rhian (my special nurse) came to see me again today as my line in my chest is still very icky.
She's given nana responsiblity for cleaning it up every day using some special antiseptic lotion which means I have to lie back with the lotion soaking into the line for about 15 minutes.
That may not sound a long time to you but it seems a very long time to me especially when I really want to play with my toys. After Auntie Rhian left, nana said, "ok Connah time for work". I helped nana by hoovering the floor. I made it more fun by trying to run nana over but I'm not sure she saw the funny side of that game. Soon it was time for school (afternoons only at the moment).
This was good fun as I painted flowers and played with playdough. Nana said she could see how much fun I had by the state of my tee shirt. Daddy had some time off work and came to meet me from school and as a special treat took me to play football in the park.
My friend Kyle was there with his daddy so we had a great time playing football together. Daddy said he would like to take us all out for a meal (strange because my Daddy is a really good chef and could easily cook us a nice meal) but nana instantly said "thankyou Chris" so off we all went.
Daddy was able to give me my bath tonight and put me to bed which was really nice. Grandad was right, today was another good day as I was a good boy for most of the time.
The question is, will I be good tomorrow ?
Posted on: 26/04/2007
I've had a really fantastic time tonight. I was allowed to go and join the fireman and the cadets at Prestatyn fire station. It was brilliant because I was able to have a workout with all the other cadets. The really excellent part though was the ride in the fire engine (the real one) and we even had the siren sounding. I was having such great fun that I decided to send nana home to do some housework (otherwise she gets me and grandad doing jobs like taking the washing out of the washing machine). Anyway, she went home and I stayed with my firemen friends. Later the firemen took me home in their mini bus - and the "elephant" fireman came with us. If you want to know what an elephant fireman looks like check out my photo album. The fireman gave me my own fireman uniform which is a little on the large size but nana says that I will soon grow into it. I am really lucky as I have a fireman's cap which is like a baseball cap and now I have a fireman sweatshirt and and fireman tee shirt. Its been such an exciting day - nana says I should sleep like a log - whatever that means. Goodnight to you all Lots of love Connah
Posted on: 25/04/2007
I've been a really good boy today ! Yes, honestly ! I did some really good writing for Auntie Jenny and she wrote "excellent" and drew a big smiley face on my work and then gave me a gold star. Then we played some word games on my blackboard. Auntie Jenny wrote some words and I had to copy them. Then, it was my turn to write words and she had to copy them. It was great fun and I wrote so neatly that nana couln't believe I had done the writing and gave me a big hug. I went to school in the aftenoon and played some great games with my special friends Jack, Thomas and Ben. We like to play quite rough (boys always do don't they) but I have to be a bit careful because its easy to pull my power rangers out (that's what I call those the lines in my chest that the doctors say I must have). Auntie Rhian (my special nurse) came to see my today and checked my lines and left me with some more medicine. The medicine is called an anitbiotic and I bet it won't taste very nice. Grandad says I have to take it to make sure I stay nice and healthy. Nana and I played cars today. I pushed them along the carpet and used her feet as hills. I'm not sure if she really liked the game that much. For my tea I'm having one of my favourite foods. I call it chicken fish balls but nana says the real name is scampi. Anyway it tastes really nice especially with the cauliflower, celeriac and potato mash served with brocolli and carrots. Luckily I like all this healthy food. Its almost time for my bath and then off to bed so I'm going to try really hard to be very, very good until bedtime so that grandad and nana can say I've been a really, really good boy today. ps did I mention that my hair is beginning to grow again ? pps I nearly forgot to mention that Auntie Jenny is going to write up my diary for a few weeks as grandad's poor fingers are almost worn away with all this typing. Auntie Jenny is not so good at explaining my day as grandad, but she is much faster at typing (her fingers fly across the keyboard). Grandad is a little slow at typing but he does his best (bless him !) Anyway, goodnight to you all Lots of love Connah
Posted on: 25/04/2007
Hello everybody, Well, as you all know its Monday again and I'm not sure if I like Monday as much as I like Saturday and Sunday. Grandad says most people feel like that so I'm not so unusual. My day started quite well as I've surprised nana by starting to eat SugarFrosties with goats milk for my breakfast. She's always pleased when I eat my food up. Auntie Jenny (my home teacher) came to have a lesson with me this morning. I was a little bit good and a little bit naughty for her. The good bits were that we did some reading together (she read my favourite story about a dog that loses his bone) and I did some lovely tracing and wrote about riding my bike in my news book. The not so good bits were that I was not in the mood for playing the memory game of matching words so I ended up on the naughty chair for a while. The lesson ended well though because we played some sound games the speech therapist sent me and I enjoyed that very much. In the afternoon I went into the garden and just enjoyed riding on my bike. As you know, I've only just learned to ride without stabilisers so I still fall off sometimes. Nana is always there to help me up and I always get straight back on again. I wasn't able to play with my friends Daniel and Katrina this afternoon because they had to do their homework but I did manage to speak to them on the phone for a while. I played Batman and Spiderman with my nana and also some games with crocodiles and dinosaurs. I was in a little mood this afternoon, so I was a bit naughty for grandad and Uncle Clive but I know they will both forgive me ! Its time for my bath now so I'll say goodnight and speak to you all tomorrow, Lots of love Connah
Posted on: 25/04/2007
Hello everyone. Well today started with a nose bleed and ended with a new "Ben 10" toy, but there was a bit in the middle! Whilst I was having breakfast this morning my nose started to bleed, it could have had something to do with the finger, which Nana had told me repeatedly not to poke up it, any way it bled for quite a long time and Grandad and Nana took turns at sitting pinching the top of my nose and holding on cold packs until it finally stopped, which was good, but it threw out our timings as we had planned a trip out. A very nice Lady called Margret had read my story in the Daily Post and she has been sending me a card every week with drawings of birds in that she see's from her room window at the residentail home which she now lives in, she also puts in 50p pocket money for me. So as she only lives about one and a half hours away we decided to go and visit her. Nana phoned up the home and asked if it was okay to visit and they said yes. So we set off on a miserable cold wet journey along the Welsh coastline to Bontnewydd to see Margret. She was very surprised as no one had told her that we were coming as they wanted her to have a surprise. She is a very nice lady who sends cards of support to several children like me, but I am the first one to visit her. She told Nana & Grandad all about herself and we told her all about me and took her some photographs for on her wall. Then I gave her a big cuddle as we had to go home again, but we will go and see her again. Back at home there was messages on the phone and on the computer to answer so Nana & Grandad got on with that whilst I played in the living room. After a while I waas feeling a bit lonely so I shouted to Grandad that he had a present in the living room for working hard. When he came in he saw a box in the middle of the floor with me inside it, I was his present! So I got a big cuddle from Grandad, when he put me down I said "Do you have a present for me"? and thats how I ended up with a new "Ben 10" toy. Do try this at home kids it worked for me! So its off to bed with my milkshake for a good nights sleep. Night, night. Love You All. Connah xxx PS Jan from America asked what she could send Connah over. If you happen to see a "Ben 10" sweatshirt to fit a large 5 year old he would Love it. Thank you
Posted on: 25/04/2007
Hello everyone. Well a very quiet day today, Grandad and me went down to see that Johnny was still alive after last nights ordeal and he was. Then I had a good play out with Katrina & Daniel. My dressing was not too yuki today so Nana didn't change it. In the afternoon we all had lunch in the garden as the weather was smashing and then Nana mowed the lawn (Nana says that Grandad can't walk in a straight line and thats after 24 years in the army!). Then we all went round to Pam & Ray's and they told us all about their holiday to New Zealand, it sounds great, except for all that time on the airplane. I was almost a good boy today so I had "Choc ice" after dinner. Thats it for today so Night, night. Love you All. Connah xxx PS "Grandad", we have recently been hit by a wave of inappropriate messages on the website, I am assured that this is just robots sending out messages and nothing malicous. We are in the process of changing the site and putting a blocker in to stop this happening, please bear with us until we have it under control. I do appologies and we try and remove them as quickly as possible. Thanks. Jim
Posted on: 25/04/2007
Hello everyone. Well today started off quite normal with "Ben 10" cartoon and breakfast followed by wash and dress and ready for Auntie Rhian (Clic Nurse) to visit and change my dressing. The two holes have now almost healed up so I was ready to go and play once I saw that it was a nice day. So as Auntie Rhian was a bit late Grandad took me out in the garden for a game of football AS Grandad is a bit old he soon got tired and I was still full of energy so Iasked if I could go on my bike, no problem says Grandad, once he had got it out of the shed I asked "why is it Grandad that I can't go as fast as Katrina & Daniel on their bikes"? Grandad said "well its probably because you still have your stabilizer wheels on". Can we take them off? So Grandad soon had his toolbox out and off came the stabilizers. We went out in the front garden where there is lots of grass and Grandad ran along behind holding the seat and giving me instructions and then next minute he was gone and I was peddling away on my own this led to one very Proud Grandad, one clapping Nana and one little boy who was so busy watching the peddles that he rode straight into a tree. But I was soon pushing my bike back up the garden to ride solo down again. So one Giant Step for me today. Auntie Rhian then came and I had my dressing done. Whilst she was doing this Nana was making juice in the juice machine for later on. I just managed a quick lunch and then it was off to school for the afternoon. Nana picked me up and then we all (Katrina included) went of to Daisy Chains to say thank you for Saturday Night. When we got back I had a quick play in the woods before it was time for a bath and some dinner. Unfortunately a fell asleep before I had eatten hardly anything (BIKING SOLO TAKES A LOT OUT OF YOU). So it was off to a nice soft bed for me and Nana & Grandad went off down the Gronant Inn for tonights Fund Raiser. Johnny Mulard had told everyone that he would have his legs waxed to raise money for my appeal and he really did a good job, people were paying money to litteraly tear strips off him and Nana & Grandad said that he didn't cry at all, thanks Johnny. I had a message from Visitor 752 tonight saying that I have some new friends over at Bolton Wanderers, thank you Gary and all the players and to visitor 752. Night, night Love You All. Connah xxxxx PS Grandad always said that Sam should be England Manager, they might win a few games then!
Posted on: 25/04/2007
Hello Everyone. Its good to be home again and Grandad, Nana and me missed doing the diary. Anyway as Grandad said before we left I had to go in for this Stem Cell Harvest. That wasn't so bad but it was the injections every day to get those stem cells jumping. The day before harvesting I had to go down to surgery and have a second line put in on the other side of my chest, so now I really felt uncomfortable with plastic tubes sticking out of each side of my chest and another small one in my leg for the injections. I had to have some pain relief so I had some Calpol, Grandad says I'm too tough for Morphine, good old Grandad!! Well the lady came and hooked me up to the machine which sucks the blood out and pumps it back in. She told Nana & Grandad that the magic number for the harvest was 4 stem cells per "so much" blood. However our Consultant wanted her to get as much as she could so she asked for 8. The lady said that she would probably have to come back the next day to get more as 8 was a very high number, any way she hooked me up and away it went. After a short time Nana noticed that my lips were turning white so Grandad shot off to get me some nice Goats milk with Calcium in and I was soon looking much better. It was a bit boring so I soon nodded off whilst watching tv. By the time I woke up it was all over and the Lady and the machine were gone, but she had told Nana and Grandad that she would probably be back for more the next day. So we all settled down for another night in Alder Hey, at around 5.30pm the Blood Testing Centre phoned the hospital to say that I had produced a count of 8.2. Much better than expected and we could all go home, YIPPPEEEEE! Grandad says that in Life with Good News there is always an "However"! My however was that I had to have the line removed out of my chest and my leg before I could go home. The one in my leg was only small and that was okay. The one in my leg took Grandad, Ian & Nana to hold onto me whilst two Nurses gently eased (If Grandad wasn't helping me write this I would not have used those exact words) the tube out of my chest, Nana's eyes nearly popped when she saw how much had been inside me. Sister Marie-Anne soon had the bleeding stopped and then I calmed down and said I was sorry to everyone for the kicking and shouting and they gave me a nice present for not hurting them too much. After that it was a race round to say Bye Bye to everyone, a quick wash and clothes on and then off down the motorway for dinner in Happies and then home to bed. This morning I was up and about and running around as normal. Grandad even took me to school on my scooter at lunch time and I had a good play with all my mates. Tonight I ate all my dinner and after ice cream went off to bed to watch Lion King. Thanks again to everyone who helped with the night at the Nova and made it such a success, I hope that I can go to the next one! Night, Night. Love You All. Connah xxx
Posted on: 25/04/2007
Hi everybody. Connah will be in Alder Hey Hospital over the next few days. Tomorrow he has another line put into his neck amd then the day after if everything is okay we will be doing the Stem Cell Harvesting. The following day he should have the second line removed and after that if all is well back home for Thursday. Once again thanks to everyone who contributed to The Fund Raiser at the Nova last night it was a truely Great Night. Will update everyone on Connah's condition as soon as we get home. Best Regards Jim
Posted on: 25/04/2007
Hello everyone. Today was a bit of a rush to get up as I had been up in the night and kept Nana and Grandad up for over an hour at 1am as I couldn't sleep. So this morning we all overslept. Nana had to dash out to see the Ladies at Daisy Chains and then as soon as she was back we were off to Alder Hey. We played "I Spy" in the car and I was very good as Grandad couldn't get it and had to give up 3 times! When we got to Alder Hey we went to the Day Care Ward as we were not staying in overnight. So the nice nurse took my blood and flushed my two lines out and then Auntie Pip arrived with some toys and we played on the bed for a while. Then Nana told me that they were going to put a small needle in my leg (I don't like needles) and Grandad said that he had something really nice for me in his pocket if I was a good boy. So we went down to the treatment room and I sat on Grandads knee and Auntie Pip from the hospital was showing me a new game she has and then suddenly there was a sharp pain in my leg that mad me jump then the nurse pushed another needle into the "butterfly" that she had stuck into my leg and thats when I really started to scream. It didn't last very long but it did hurt, afterwards Grandad told me that "its okay to cry a little bit". Everyone said how brave I had been and te nurse said that she had to push it in really hard as I had "big" musceles in my leg. The surpise was a new Spiderman watch and I also got an Easter Egg from Pip and a cuddly horse as all the Jockies from Aintree had visited the ward in the morning but I had missed them. After that we drove home and Nana and me fell asleep in the back of the car. Grandad stayed awake in the front (I think). So when we got home I had a bit more sleep and then woke up and ate my egg from Pip, which is the reason why I didn't eat all my dinner tonight as I was full of chocolate that naughty Auntie Pip had given me, so its not my fault is it!! No bath tonight as I still have the butterfly in my leg for tomorrows injection. As I had a sleep in the car I will probably be up late tonight, but I best say Night, night now as I may fall asleep watching Spiderman! Love You All. Connah xxxxx
Posted on: 25/04/2007
Hello everyone. Another dry day if not too sunny. This morning I was up, washed, breakfast and dressed and ready to go off to Kids Club with my lunchbox under my arm bright and early. I went off in Auntie Marie's car with Katrina & Daniel and had a smashing time with some of my friends from school. Meanwhile Nana was out walking the streets! posting flyers for volunteers for the future Village Panto. Grandad had to go up to Glan Clwyd Hospital as the antibiotics had still not cleared up the infection on my line, so nasty muck is still coming out of the hole in my chest. I came back from K.C. at about 3pm and then went straight out to play in the garden. After I had fell of the wall in the garden and scrapped my knee, trapped my hand in the trolly mechanisum and stubbed my toe and fell over I decided that it was time for a rest so I had Katrina push me up and down the driveway in my buggy (halfway between a pushchair and a wheelchair) while I gave directions! Auntie Paulina & Uncle Clive came to visit and then it was on to putting up balloons and decorations on Auntie Marie's fence before Uncle Jay came home as it is his Birthday today. Happy Birthday Uncle Jay! I had got really mucky while I was out so it was straight into the bath before dinner time. Just as I was finishing my pudding Katrina came round with 3 pieces of Uncle Jays Birthday cake, smashing I thought one now, one for breakfast and one for lunch, but Nana and Grandad had another plan! Its back to Alder Hey in the morning to start the G-CSF Injections before they suck out my blood next week for Stem Cell Harvest. Hope I don't dream about that tonight. Night, night. Love You All Connah xxx
Posted on: 25/04/2007
Hello everyone. Today was another lovely sunny day in Wales. We had breakfast and then Grandad took me down to the park while Nana did all the house work! Tommy was down there and soon Ben turned up and we had a good time playing on the slide and climbing the ropes. Then we all shared the crisps that Nana had put in my lunch box and my drink, but we had to wait a while as when it was Tommies turn for crisps he went off to talk to his Mum and Ben and me had to wait till he came back! Later on some other boys came and we played football, but Grandad told me off as I kept picking the ball up and running with it (wonder how I got that idea!). Then it was off home and Katrina & Daniel were playing out so I had even more fun. Mid afternoon I had to go to the shops with Nana & Grandad as we had run out of fruit and vegatables. On the way back we picked up a copy of the Evening Leader as there was a big double page spread on me. There was even a photo of Uncle Jay and me on the quad bike, its his Birthday tomorrow! Before dinner I got some more time out with Katrina & Daniel and then Tommy and his Dad turned up and we had more fun on the trampoleen. By the time dinner came round I was pooped! But just managed to have a bath before climbing into bed to cuddle up with "Blue Ted & Spotty Dog". I used to have a dog called "Monty" but he has had to go and live somewhere else until I can have the line taken out of my chest, Nana says that may be a while yet. I miss him and I bet he misses me as I used to give him lots of cuddles. Night, night. Love You All Connah xxxxx
Posted on: 25/04/2007
Hello everyone. It started out a quiet day today and then Roland from the Daily Post phoned to say that he would like to come early to interview me instead of in the afternoon. So Grandad rushed out to post off some vests to Sara in Cardiff for her special fund raising day on the 12th, anyone going through Cardiff Airport on that day please look out for Ladies wearing "Connah" tops. Nana meanwhile was rushing around getting me ready, (I did dress myself though)doing her and oh yes changing out of her dressing gown. Grandad just made it back in time. Roland's a nice man, he brought me a "Hot Wheels Car" to play with. I was thinking of sharing my Easter Eggs with him as he told me that he only got one and that was from his Mum! So come on you people at the Daily Post more eggs for Roland or else I will come down in my Power Ranger suit and sort you out! So Roland sat and talked to us for ages, all about my condition, where we had lived, Grandad in the Army (sounded like Cpl Jones in Dads Army fighting the Fuzi Wuzzis!) and then we went outside and did some videoing on my trampoleen and slide, he was good on the trampoleen. Then Nana, Me and Grandad went outside and we were running on the garden passing the rugby ball, the Rhyl Rugby Coach would have been proud of me. So Roland stayed a long time and it was a nice day. Afterwards Nana dashed out to Daisy Chains to talk to the girls about Saturday Night at the Nova and Grandad took me outside to play some more football. We had to come in as whilst we were leaning over the fence to talk to Alison in the woods with her dog "Honey" I caught my new jumper on the barbed wire fence, (shsss don't tell Nana). After dinner and a wash I went and sat on Nana's knee for a cuddle and fell fast asleep! Night, night. Love You All Connah xxxx PS Grandad added the last bit as I was fast asleep!
Posted on: 25/04/2007
Hello everyone. It was up early as I started being sick as soon as I woke up, Nana said its the Chemo from Friday, but I was soon out and into the garden in my jamas and dressing gown searching in all the bushes and plant pots to see what the Easter Bunny had left me and guess what she had left me loads! Good old Easter (Nana) Bunny. At lunch time Nana went down to the Gronant Inn were they were having an Easter Fest and she set up a stall to sell some of my newly arrived t-shirts and visi-vests. Daddy, Katrina, Daniel and me played rugby with my new ball from Rhyl Rugby Club in the front garden as the weather was great. Later on we went down to the pub to help Nana out, well Grandad did, I played on a skateboard with some of my friends from school. We met another lady there called Jenny who also has a line in her chest just like me, we hope that she gets better soon. About tea time it started to get a bit cool so we all went home and had dinner. I still had some juice to drink from this mornings juicing with Daddy, so I drank that with my dinner. By this time Nana & Grandad were worn out so I had a quick bath and went off to bed so that they could pass out on the settee! Night, night. Love you All. Connah xxxx PS Grandad says don't forget Easter is about something more important than chocolate
Posted on: 25/04/2007
Hello everyone. What a day, I'm tired out. This morning Nana rushed out down to see Ian from SimplyLogo to pick up some vests and t-shirts to use today. Then Grandad and I went off down to the Fire Station in Prestatyn where Fire fighters / Young Fire fighters and Fire fighters Wives had turned out in force to hold a Charity Car wash day to help my appeal. It was great fun, hard work and very well organised. Everyone mucked in including me and Mr. Elephant and occaisionally Grandad. Lots of people came through and had their cars washed and the lads and young ladies and the ladies kept everyone going with tea and wads. We really appreciate all the hard work that Station Manager Bob Edwards and his crew put in today and also thank you to Martin for contacting Grandad and Mr. Elephant Man (Steve) for looking after me. During the morning Daddy arrived and then we all went home for lunch. When I got home my chest infection had really been weeping so Nana cleaned it up and changed my dressing. Later on we went back to the Fire Station to thank everyone, but Grandad wouldn't let me help again as he didn't want me to get my dressing wet again. After that it was a quick ice cream in Prestatyn while Nana did the shopping and then off home to watch Star Wars Movie while we had dinner, then before I finally flaked out a quick bath before bed. Night, night Love you All. Connah xxxx PS Tomorrow is a street fair in Gronant from 12 - 5pm see you there!
Posted on: 25/04/2007
Hello everyone. Well guess who was good this morning and ate all there breakfast up in short order? You guessed it was me! After that we were off down the road to Alder Hey. Grandad got it wrong it was not the "Big needle" today, it was 30 minutes of Chemotherapy folled by 4 hours of hydration. This is to lower my blood levels and then next week they give me the injection to boost them up really quick so that my body produces lots of Stem Cells so that the hospital can harvest them. Whilst I was having my chemo + hydration I played cars with another little boy and Nana wnet off to see Baby Emma who is on the surgical ward after her operation. She was lots better Nana said. Then about half past five Matt disconnected me from the drip and I was allowed home. Grandad drove us home by the time we got home it was a bit late for playing out so I had some dinner and watched cartoons until it was time for bed. Tomorrow we are up early to go and get some T-Shirts to take down to all the people from the Fire Service who are spending Saturday washing cars in Presatyn to help me. Night, night. Love you All Connah xxxx
Posted on: 25/04/2007
Hello everyone. Tonight before I went to sleep I said sorry to Nana and Grandad for being really silly all day long. It started when I got up and wouldn't eat my breakfast, so Nana said "no more cartoons at breakfast time". Then I wouldn't put my clothes on. Grandad took me to kids club where I had a good time with others from my school. Then Grandad came and picked me up to go and meet a lady from the Evening Leader who came from a long way off just to talk to me. Well I was a more silly and wouldn't talk to her properly so Grandad took me out in the garden on my bike while Nana talked to her. Then we went off to Rhyl Rugby Club Social Club to talk to a nice man called Lee about holding a fund raising event at the Club in May. He was very nice and gave me a rugby ball and shirt (see photo), so Grandad and me practiced running and passing on the dance floor! Then it was off to buy some new clothes as I am growing bigger. Once again I was not on my best behaviour in the shop. So when we got home Grandad said "no cartoons". I did eat all my dinner though and an apple afterwards. So after my bath it was off to bed and a talking to about waking up in a better mood tomorrow. In the morning we are off to Alder Hey to have a Big Needle stuck in my leg (it made Baby Emma scream). Night, night. Love you All. Connah xxxx PS Thank you all for praying hard last night Emma's operation was a success today and they removed all of her tumour.
Posted on: 25/04/2007
Hello everyone. "Ben 10" (cartoon) twice in one day, yipee!!! Back to earth. Today was another sunny day her in Wales. We have lots of birds and squirrels in our garden that we watch from the window in the living room, but today everything in the garden was still. A killer was hidding in the bushes in the rockery and nothing was moving. "Tilly" Katrina & Daniels cat had a mouse cornered in our dry stone wall and she had been pacing up and down infront of it all yesterday and now she was hid in the bushes waiting for the mouse to make its move, that is until Grandad went out and shooo'd her away. Well after breakfast Nana took me down to kids club next to Gronant School while she attended a coffee morning with some of the other Mums, during which some of the Mums made a donation to my appeal, thank you. Then we went back home and Auntie Jenny came round to do some more schooling as I will be spending some time at the hospital next week when the other kids go back. My reading and writting is getting better and better. Later on Nana cut Auntie Jenny's hair! (Grandad says that at times like this its best to stay very quiet). Auntie Jenny gave Nana some money to put into my fund as well. Thanks Auntie Jenny. At this time a man called Roland phoned from the Daily Post Newspaper and just after a lady named Joanne called from the Evening Leader Newspaper, to ask if they could come and do a story on me tomorrow, also they had run a story on the 30th March (which Grandad has now looked up on the internet and read and we all thought was very good). Something will be in the paper on Easter Monday, so keep an eye out for me. Then it was off down to the Gronant Inn to have a quick photo with Johnny as he is going to have his "very hairy" legs waxed to help raise money for my fund, we practiced pulling plasters off to get him in the mood, he is very brave as it hurts me when they take my dressing off sometimes and I don't have any hairs yet! When we got home Grandad had an e-mail from Martin at the Fire Station to say that he was organising car washing on Saturday outside the Prestatyn fire station so please take your car down to have it washed. After dinner I was very tired so I went straight to bed, but before I go to sleep please think about Baby Emma who had her operation today and also Jack who is in America having treatment now and who is not very well. Night, night. Love you All Connah xxx PS Thanks Nana Sara & Grandad Mark for the Easter Card xx
Posted on: 25/04/2007
Hello everyone. Well today I was up bright and early and in time for "Ben 10". After breakfast I went for a bath as I had been very sweaty in bed last night. Then Auntie Rhian arrived to check out my infection, which is now starting to clear up thank goodness. As soon as I was done it was off to school with Auntie Jenny, yes you heard right I am still having school even though everyone else is on holiday, but I like it. After lunch I putmy Scoobie Doo costune on and went off with Grandad to Glan Clwyd hospital to have my hearing checked. Two nice ladies gave me lots of different tests to do and then they "tweaked" my hearing aid (which I don't like wearing) so that it picked up the sounds better for me. We managed to get home just in time for me to have a couple of hours playing out in the garden with Katrina & Daniel before it was in for dinner.One of my friends from Alder Hey's Daddies phoned up tonight to say that she was having her "big operation" tomorrow to have her tumour removed (www.babyemma.co.uk). So could everyone help us in saying a little prayer tonight that everything goes okay for her tomorrow, thank you. Thanks to the Lady from Canada who said that the Wii was great, Grandad will try and get me one. Also thank you to Margret from Bontnewydd who sent me a really nice Easter Card. Night, night. Love You All. Connah xxxxx
Posted on: 25/04/2007
Hello everyone. These days are definately getting longer, I'm doing lots more now Grandad put the clocks forward. So saying woke up late this morning and missed "Ben 10" on cartoon network! Then had breakfast and managed to get dressed before any visitors arrived, just. Auntie Jenny came round to see how I was, she is on school holiday but she misses me and she wanted to know how we had got on on Friday night. Then Nana started phoning people and Grandad started answering e-mails. Later on Ash from www.freshties.com (check it out) phoned to see how I was doing and to tell Grandad about new changes to the site. It was just after that that "Charlies Angels" arrived, 3 beautiful ladies from North Wales Fire Service who came to present me with a cheque which was a donation from "Dawn's Ball" which they had held last month and Auntie Heather attended as I was in hospital at the time. So thank you very much. By this time I was absaloutly bursting to get into the garden as we were having another lovely sunny day. So it was outside to play with Katrina & Daniel. Later in the day Auntie Marie took all 3 of us on a walk up to "Bluebell wood" she did have to give me a bit of help to get back, but at least it was down hill. Then it was back to playing out until Auntie Gill arrived with some stuff for Nana's car boot sale and a couple of bottles of beer for Grandad. Nana went off to a meeting at the Gronant Inn about the Panto that they have planned for later in the year. Mean while back at the ranch Grandad had been getting me to eat my dinner abley assisted by Auntie Gill and also preparing the vegatables for Uncle Billie, Auntie Heather and thier family to come round for dinner. We all had a good time and I had my picture taken with Baby Addison before going off to bed (before anyone asked me to help with the washing up, thank goodness). Night, night everyone. Love you. Connah xxxxx PS Grandad says that we have tried contacting a couple of "Celebs" and not had much response. However Andy Baker (World's Greatest DJ "check out his website) is contacting some people who are willing to help and come down to a future fund raising event. If anyone has a link to someone please let us know!
Posted on: 25/04/2007
Hello everyone. No rest for the wicked today, I was up bright and early and got Daddy, Nana & Grandad up. So after breakfast it was juicing time and we had lots of good stuff today. By 10.30 I was out playing with Katrina and Daniel, Nana was mowing the lawn, Daddy was ironing my clothes and Grandad was doing the hoovering. Uncle Jay got Daniel's quad bike out and I got a ride on it with Uncle Jay, great!!!! We had a great time playing and then I had lunch at Auntie Marie & Uncle Jay's house. After Nana finished the garden we had a visit from Anaira, Ian, Hellen & Ewen. They have been helping us out a lot with T-Shirts from SimplyLogo, we all played on my park in the sunshine while the grown ups had coffee and cake on the decking. Then we had a game of football in the garden Ian was Man Utd and Me & Grandad were Man City, all I can say is the visitors didn't go home with 3 points today! Later on Alison from over the lane came to visit and I went back out for a quick play with Katrina. Then it was dinner time, carrots, broccoli, mash, cealeric and fish and I had it all. To finish off the day we had a couple of "Lilo & Stitch" cartoons a bath and my yukii dressing changed. Then off to bed, closely followed by Nana and Grandad. I think I heard Grandad say that he was "on his chin strap" whatever that means. Soon be up time I said! Night, night. Love You All. Connah xxxx
Posted on: 25/04/2007
Hello everyone. Today is Saturday so we all had a lay in bed until 08.30am and then Grandad had a bit extra (well he is getting on a bit now!). After breakfast we went down to Lyons Den Gym for the kids Saturday workout. Auntie Jenny treated me to it today and took me in whilst Nana and Grandad went for a workout down stairs. We had a smashing time and Auntie Jenny got to do stuff that she hasn't done before, like bouncing around on a "space hopper". We had a good time and then she gave me some new books which she had signed out from the liberary for us to read. It was a really nice day today so after lunch Nana mowed the front garden whilst Daddy took me to the park and Grandad tried fixing his computer (without much luck!). There wasn't too many kids down at the park so we came back after an hour. Uncle Jay was outside fixing his house up and Nana asked him if he had a bit of spare cement. He did so he came round and fixed a bit on my play area wall which had fallen off. Then is was time for dinner and watching the new series of "Dr. Who", not as good as the dinosaures on Primevil though! I was a good boy whilst Nana changed my dressing, it is still looking a bit yukiii, but I took all four lots of my medicine today, so it should get better soon. Thanks again to all of the ladies from Daisy Chains and to everyone who is leaving messages. Night, night. Love you All. Connah xxxxx
Posted on: 25/04/2007
Hello everyone. We had a fund raising event last night at the "Con Club" in Prestatyn. It was all organised and run by the ladies from Daisy Chains and was a great success and they raised loads of money for my Appeal, so thank you very much. However Grandad got home late and didn't do the site so a double entry today! Well Auntie Jenny came and you won't believe it, she put a Gold Star in my book for good reading! Then a lady called Elspeth came to check on my hearing and my hearing aid. She was very nice and also gave me some "Good Boy" stickers. She told Grandad that she was just hoping that she didn't have a flat tyre on the way like Helen the speech lady! Then it was up to school with Nana at lunch time to have a quick play in the yard and then into afternoon school. While I was doing this Nana went round to five of the local Primary Schools and was informing them about my condition and how it started and also handing out "flyers" for my new T-Shirts. Grandad says that shortly there will be a page on the website where you can order them as well. After school we rushed off to Glan Clwyd Hospital as I still have a discharge comming out of my chest, so Nana & Grandad thought that the Dr. best look at it. I saw my Nursie friends Grace and Elen and tey were pleased to see me again. The Dr. had a look and gave me some more medicine to take. Woosh back home in Nana's car (Grandad says that Nana nearly drives as fast as Auntie Heather, but she hasn't made anyone cry yet!). When I had gone to bed Nana and Grandad went off to the fund raiser and I stayed home with my friend Ryan who watched over me whilst I was asleep. Grandad and Nana met Holy-Jay and William who had come over from N.Ireland just to come to the fund raiser (well almost). As I'm now wide awake I have to say "Good Morning" everyone and have a wonderful day, we are off to the gym in a minute. Bye for now. Love. Connah xxxxx
Posted on: 25/04/2007
Hello everyone. Well there was lots of schooling today. Auntie Jenny came and I surprised her as I was still being good and then after she left it was a quick bowl of Spaghetti and off to Gronant School for a play in the yard before the bell went and then into class for more learning, the teachers are really doing a good job with me and I really enjoy it. Aftre school it was straight into "kids club" for a play with my mates. Grandad was waiting to give me a big hug when Nana brought me home as he had gone out early in the morning and I had not seen him all day! After dinner I had a bath and we played "Ninja Turtles" in the bubbles. Nana changed my dressing when I came out of the bath and her and grandad are not too happy as it looks like the hole in my chest is looking more infected instead of getting better so it will be off to Glan Clywd Hospital tomorrow so they can have a look. Has anyone out there got one of these Nintendo WII's at home? (Grandad thinks that its a very odd name) If so please let me know if they are any good as Grandad and Nana will get me one for when I can't go out to play if they are. Oh almost forgot. When I got home Grandad took our photo in the Appeal T-Shirts. Have a look at the picture page. They will shortly be on sale if anyone wants one? Thats it for today. Night, night. Love you all. Connah xx PS I had breakfast dressed as Spiderman this morning, if you think thats strange you should have seen what Nana was wearing!
Posted on: 25/04/2007
Hello everyone. Whoosh another day gone, what happeened! Well Nana rushed out of the house just before Auntie Jenny arrived, muttering her catch phrase "I'm late, I'm late". Then I did really good schooling with Auntie Jenny. We did reading which she says I'm very good at, we had the "pairing memory game" which she says I am very good at, and we did colouring, which I could be good at one day if I keep trying! Then we had lunch when Nana got back from talking to the really nice people at SimplyLogo. Then guess what? it was time to rush off to Daisy Chains for more photo's in my new t-shirts. This time for the Evening Leader so look out for it tomorrow or the day after. While I was there I had a good play with some of my old friends and all the Ladies there are really nice! When we got home it was too late to play out so Nana made me dinner of lots of good stuff (but she won't tell me whats in it as she knows I will probably say no way, but it tastes good). We were going to go for a tank ride down at Grandads old Regiment but we had to put it off as they were very busy getting ready to go to Iraq in a couple of weeks. Its time for bed again! Hope you all have a good nights sleep and thank you to all of the people who sent in donations or who have been e-mailing Grandad with offers to help. Night, night. Love You All Connah xxxx PS I am doing really well on my Biff & Chip books so get some more ready please Mrs Barrett!
Posted on: 25/04/2007
Hello everyone. Grandad says sorryeeee for last night, but I had Auntie Jenny for schooling in the morning and then I had to dash off to Glan Clwyd hospital for a blood test. While I was there Nana and Grandad got talking to one of the Consultants and we were late coming back. Just as we arrived home a lady called Hellen phoned who is a speech therapist to say that she was on her way to see me but had a flat tyre. Grandad jumped into his blue spandex tights and rushed out to save her, well actual change her tyre. She was really nice and got me doing all different sounds. The Chemo has affected my hearing which has had a knock on effect with my speech. But Helen was really pleased with me and is going to send me some exercises to do. After that it was outside to play with Katrina whilst dinner was made and then off to bed. Grandad had some work to write up for the Consultant and didn't finish till 1am so he did not do my diary. As luck would have it (and Grandad said he is only lucky in love!) we woke up this morning to no electricity, all of the village was off so Grandads plan to get up and fill in the diary before anyone noticed was shot full of holes! Anyway onto today. We had lots of new donations waiting at the post office this morning, thank you all very much and special thanks to Julia,Rhys and Great Grandad who raised £500 at a coffee morning in Prestatyn, thats an awful lot of coffee Nana said! Also thanks to the gentleman from Singapore who made a donation. So this morning I was gooooood for Auntie Jenny. Then had a star in my reading book at school from Mrs Barrett for doing such good reading, she likes me!! Oh yes I was in the Daily Post today, if you don't get it log onto North Wales News to see me! After Grandad picked me up from school I came home and had a long play out with Katrina and Danial. The blood test came back that my Neutrophiles are really low so at the moment I am open to infection so I always stay away from people with colds. Bath night tonight with Green Power Ranger and then it was a glass of chocolate soya milk and then I fell fast asleep as soon as my head hit the pillow. Night, night Love you all Connah xxxx
Posted on: 25/04/2007
Hello everyone. Another day flashed by at blistering speed. First we all got up late as Nana forgot to put the clocks forward. So Katrina & Daniel were soon round as Nana told them to be here early for juicing! So we all took turns at mixing the fruit up, but todays was not as good as yesterdays. After getting washed and dressed it was off to pick up Ryan and Darylanne who took me to the cinema to see "Teenage Mutant Ninja Turtles". Grandad told me that he had taken my Daddy to see it the first time it had come out (probably in B&W in those days). When we came out of the pictures they took me on the carousel ride which is close by. Grandad picked us up and we all went home for a quick wash and brush up and off to the Gronant Inn where they were having a "Kids Karaoke", I sang "Bob the builder" and "yellow Submarine". I was good but some of the girls were better. Then it was home for dinner and bed as Auntie Jenny is here in the morning. Grandad said that you will see a change in my photo's shortly, the chemotherapy is coming out of my system so my hair is starting to grow back! Night, night Love you Connah xxxx
Posted on: 25/04/2007
Hi everyone. Don't forget if you have an idea to help Connah please e-mail me at Jim.email@example.com, also if you have any suggestions which you think will improve Connah's site please let me have them. I try and respond to everyone who leaves an e-mail address but a couple of people they have just bounced back. So if you didn't receive an answer to something e-mail me directly. Cheers Jim
Posted on: 25/04/2007
Hello everyone. Today was really sunny here and a nice day for playing out. After I was dressed this morning Katrina came round and we pushed loads of fresh fruit and vegatables into the juicer and made lots of nice juice that we all drank afterwards. Tomorrow morning its Bannanas and Strawberries! After that we went out and played in the garden until Auntie Linda & Uncle Tony came to visit. They brought up a car load of stuff that people had donated to raise funds, thank you. Last night Nana & Grandad went out to the Gronant Inn to support the bingo / Quiz Night which they were holding for me (no they didn't leave me on my own!)The Gronant Inn and the village have been doing lots of good stuff to help me, thank you. Did you see the tee-shirts from the compitition they were Brill! I went out and did some more playing and came in covered in dirt so it was bath time again tonight! Grandad again read out the messages that you had left for me from all over the World, China, Malaysia, San Francisco (That caused Grandad to break into a "Frank S" song, cover your ears!) Sloveinia, Poland and Deeside! Thanks everyone. Night, night. (Dream of bed bugs tonight! Lion King). Love you Connah xxx
Posted on: 25/04/2007
Hello everyone. Well another good day today. Last night we achieved the first milestone we have raised £1,000 towards my treatment. Thank you to everyone who donated and everyone who continues to send messages of support, there is more good news today we received another big boost of a total of £1,500 donated which will boost the fund to £2,510. thanks everyone. Nana cried when she was reading out the cards and letters from everyone. Its the same when we are reading all of your lovely messages! Any way I went off to school this afternoon and had a good time with all of my friends, I have really missed them. Nana went to a meeting to organise a coffee morning and Grandad got to do the house work (Nana says 24 years in the Army he must be good at cleaning up!). After that we went straight to Daisy Chains Nursery. They had held a compition to for the children to draw a picture of me so that we could use it as a logo on tee-shirts. I gave out prizes to the best three entries and "Simply Logo" put the first place design onto tee-shirts for us (photographs tomorrow). Then it was back home for dinner and bed as I was bushed! Night, night Love you all Connah xxx PS We are still working on the updates to the website
Posted on: 25/04/2007
Hello everyone. I hope that you all had as good a day as I did today. Auntie Jenny came and I was good all of the time and did good work, Yippeee! Then Auntie Rhian came to change my dressing as I still had some muck coming out of it, but it looked a lot better today. Then at 1pm Nana took be back to school for the afternoon, it was smashing to be back with all of my friends again and I had a really good time. After that I went to kids club and had more fun with my friends, so today was really good. Tonight after dinner we had a group hug in the kitchen which I like doing and then it was bath and off to bed. I cuddle up to three of my favourite toys at night and we keep each other warm when its cold outside. Grandad said I have to say something about what I like so that all my new friends know more about me: I like Power Rangers and Spiderman to play with. My favourite cartoons are Teen Titans and Ben 10. My favourite movie is Peter Pan. I like playing football in the garden and my football team is (close your eyes Daddy and it won't hurt) Manchester City. Thats who Grandad and my Best Friend Jack support. I also like exploring in the woods with Daniel and Katrina next door. I know all of the Alphabet and can write my name and I love doing jigsaws. Thats all for tonight Night, night Love you. Connah xxx PS Hope you like the new photo's thats what happened with the TV man on the trampoleen.
Posted on: 25/04/2007
Hello everyone. Grandad could not believe his eyes when he opened up my website this morning, there were loads and loads of messages from all around the World. Thank you to everyone who visited my site and to those that left a message for me and my family, we really appreciate it and every message gives me more determination to "Get Better". This morning Auntie Jenny came and today I was not too bad and I did some good work. Nana took me to the park next to the school so that I could meet some of my friends as they were finishing for the day so we had a good run around then it was off to town for some new trousers and then we went to visit the ladies at Daisy Chains to talk about the fund raising event at the Nova in Prestatyn on April 14th. Anyone who requires a ticket please phone Louise on 07867882371 we would love to see you there. Then we came home for dinner and Daddy phoned from work to see how I was doing and if I was eatting all of my dinner up (of course I was). Tonight we read through some more of your messages and Grandad even let me help reply to some until I kept pressing the keys down for too long and making long wwwwwwwww's across the page! and then it was off to bed. Grandad is trying to make a few changes to the website over the next few days. He is trying to put a short video clip together so that you can see me in action! Also we will have all of the main pages in the Welsh language as well as English. We hope that everyone keeps logging on and sending me messages. Night, night. Love you all Connah xxx PS Wanda you didn't put your full e-mail address?
Posted on: 25/04/2007
Hello everyone. Well what a day,Grandad checked the website and was amazed at how many "hits" we had had. Thank you BBC Wales. Auntie Jenny came for my schooling and guess what I was not a good boy again. However I did redeem myself before the end of class and did some good work which she was pleased with, sorry Auntie Jenny! We then all sat down and watched the BBC interview on the lunch time news, I saw myself on TV wasn't I good! Then two nice men turned up from ITV WALES to see me and my support team! for another interview. This time it was hard work as it was all done on my play area but we had good fun as both Nana and the TV man ended up in the trampoleen (for anyone who saw the interview on ITV please erase from your memory bank any images of Nana playing horses in the trampoleen, on pain of death if it is ever mentioned again!). Any way we had great fun! Later my friends Katrina & Danial came round to play for an hour after school. After dinner time I went for a bath and Nana said that my Neutrophiles must be low as I have a couple of bruises from playing so hard this afternoon. Tonight we again saw ourselves on the TV.Grandad has just finished repleying to all of the e-mails and messages on my site that left addresses. Thank you all for the messages of support which you have sent to me and my family. Night, night. Love to everyone Connah XXX
Posted on: 25/04/2007
Hello everyone. Thank you very much to everyone who has left a message of support for me. To everyone who has left a contact message we will get back to you as soon as possible, but Grandad has been a little overwhelmed by the level of your response so give him time as he is getting on a bit! If you want to contact Grandad directly his e-mail address is firstname.lastname@example.org Thanks once again for all of your smashing messages and your support. Watch out for my diary update tonight Love Connah xxxx PS I will be on ITV Wales tonight some time after 5.30pm. If not then tomorrow sometime. Watch me having fun on the trampolene!
Posted on: 25/04/2007
Hello everyone. Well today had its ups and downs. Auntie Jenny came early to do my schooling and I was not very good and played her up, so school work suffered! Then a nice lady and a gentleman came from the BBC to talk to Daddy, Nana, Grandad but mainly me!It was good fun being infront of the camera and they even did some of me singing, so I'm expecting a call from Simon Cowell to fill one of those vacant slots on his panel! After that another lady from the BBC called Sian phoned and spoke to Grandad about some of my great photo's for on the internet news. After that we had to go shopping and we met up with Katrina & Daniel in Icelands, I caused them to get told off so I was in more bad books! After we got home and had dinner I went to bed as I have started with a cold! No high temperatures yet though so the de-toxing with lots of organic food and drink is still working getting those chemo drugs out of my system quicker. Thats it for today. Night, night Love Connah xxx
Posted on: 25/04/2007
Hello everyone. This morning after breakfast Nana, Grandad and me put loads of fresh fruit and vegatables into our juicer. It was fun pushing them in and watching them get all mashed up. We all had a glass of juice and said "cheers" before drinking up! At lunch time we went down to the Gronant Inn for Mothers Day lunch and Sandy treated us all to a smashing meal. After that we went home and Nana did colouring and dot to dot with me. Grandad tried fixing his printer but had no luck! Nana and Grandad have been in touch with a hospital in Houston Texas where they help clean peoples blood of the nasty cancer cells. They are asking if they would be able to help me too! I'm in bed now as its a big day tomorrow. Auntie Jenny is coming early and the BBC are coming to do an interview with me (fame at last) Night, night. Love Connah xxx
Posted on: 25/04/2007
Hello everyone. Today was another busy day. It started when the postman came early to deliever Nana's Mothers Day present for tomorrow (hope all you girls and boys remembered)! Then it was breakfast, wash and dressed and off to the gym for Saturday morning kids workout with Grandad. We had a smashing time. Back for lunch a quick play in the garden with Katrina and Daniel and then off to my mate Jack's Birthday Party at the Gronant Inn with Nana. (Thanks to Sandy and everyone at the Gronant Inn for raising money for my appeal last night by having a raffle at the St Patricks Pub night). Jack's Party was really good and we had lots of fun and I won a medal for singing "Yellow Submarine". Then it was back home for cartoons, playing on the carpet with pirates and dinner. After that I went off to bed and Nana & Grandad collapsed! Night, night Love Connah xxx PS Thanks to the lady at the newsagent in Gronant who gave me a "Ben 10" comic!
Posted on: 25/04/2007
Hello Everyone. Yesterday Nana was racing around getting tickets sold for the Bingo night while Grandad and me lazed around at home, well thats what Nana said! I had school with Auntie Jenny and Grandad was doing the ironing. So last night went really well and thanks to everyone who helped and everyone who attended. Tonight is an Irish Pub night at the Gronant Inn, so if you fancy a pint a song and a jig come on down. Last night Grandad lost the link to the website so he didn't update the diary, silly Grandad. Must go as Auntie Rhian is on the way to clean my dressing as I still have muck coming out of my chest. Bye for now. Love Connah xxx
Posted on: 25/04/2007
Hello everyone. Today was very tiring, for Nana not for me! After Auntie Jenny had finished my schooling Nana took me around the village in my chair trying to sell some tickets for the bingo night at Gronant School Family Centre tomorrow night. I just jumped out at all the places we stopped at and filled up on biscuits, drinks and sweets, chased peoples dogs and cats and had a throughly good time, Nana sold her tickets and provided the steam for us to get back home in time for tea, good old Nana! My chest is still weeping a bit but no signs of a temperature yet as Grandad keeps a good check. Thats it for now, I'm tucked up in bed with Spoty Dog and Blue Ted so... Night, night Love Connah xxxx
Posted on: 25/04/2007
Hello everyone, Today started early as the postman came at 07.30hrs with Nana's Mothers Day present (DVD OF "The Queen"). He woke me up as well so it was an early start for everyone. When I was having a wash Grandad noticed that I had something nasty coming out of the hole in my chest where my central line goes in, so he phoned Auntie Rhian to come and look at it. While we were waiting Auntie Jenny came to do my schooling and we had a really good time. I like learning and I miss my school and my friends. After lunch Auntie Rhian phoned to say that she would meet us at Glan Clwyd Hospital so we drove over and she confirmed that it looked as though I have an infection on my line. She has taken a swab to see if I will need antibiotics and then she re-dressed it. I also saw Helen my mate Jacks sister on Paddington Ward. Later we went home and Katrina came round and played while dinner was being made. Daddy phoned from work to see how I was and I was so busy playing that I nearly dropped the phone in the sink when giving it back to Nana. I ate all my dinner and now I'm off to bed. Night, night Love Connah xxx
Posted on: 25/04/2007
Hello everybody, sorry that I have not kept you up to date for a while but I have been in Hospital on my last round of Chemo since coming back from holiday. So the last 5 days I have spent in bed having the last of the Chemo. While I was in I helped Nana making butterfly pencils and drawing a Christmas card for Auntie Rhian for the CLIC Sargeant Charity. I met lots of other boys and girls on the ward and some of them were also from Wales. On Thursday and Friday I was out of sorts with Daddy, Nana & Grandad as someone said that they would visit me and they did not show up! I am now finished with Chemotherapy. Unfortunately it has not had much effect on my condition, the tumour's have again only slightly shrunk, which is good news that they are shrinking but bad news as it makes operating to remove them more difficult. I am due to return to Alder Hey in early April to start the Stem Cell harvesting process. More about that nearer the time. At the minute I am feeling well and today Auntie Jenny came round to give me some schooling and then I went down to Gronant School at lunch time to have a run around with all of my mates. After that I went to Daisy Chains in Prestatyn were I had a play while Nana & Grandad went shopping. Daisy Chains are doing a great job of putting together an event at the Nova Center on the 14th April. This is in aid of my appeal so please give the nice ladies a ring on 07867882371 and buy a ticket for a fun night out! I had a smashing time on holiday, thanks to Auntie Heather for keeping everyone updated. and will shortly be putting some photo's on the site, Watch out for Nana on a camel, she survived, but not too sure about the camel!!! Night night Love Connah xxx
Posted on: 25/04/2007
We are having a relaxing day today as my back, legs and arms are sore. After a 3hour marathon swim in the pool yesterday so Nana and Grandad ay I have to take it easy today a little sight- seeing and shopping :( (boring!.) Never mind it's just great being here I think about all my friends back home suffering the cold, windy weather ha! ha! ha! :) talk to you all again soon love Connah Nana&Grandad xxx
Posted on: 25/04/2007
Lots of more swimming and playing today its brilliant. talk to you all again soon love Connah Nana Grandad xxx
Posted on: 25/04/2007
Well we all arived in Egypt yesterday afternoon without any problems woth our flights apart from not being able to sit together which was a bit of a pain. our hotel is lovely and the pool is fantastic I am having a brilliant time as it's been so long sinc i have been allowed to swim I dont like the food here the mash has too much butter and the sausages taste funny so I think nana is a bit worried about me losing weight. The weather is very hot during the day but can be very cool when the sun goes down which we werent prepared for. Talk to you all again soon love Connah Nana and Grandad xxx
Posted on: 25/04/2007
Hello everyone. Today I went to visit a girl called Natasha. She has the same illness as I do, but she had it long before I did and she had hers removed. My Nana and Grandad wanted to talk to her Parents on how they got through it, so I went and played upstairs with her two Brothers and their "Bionicales". Before we left they gave me a smashing present. Natasha has to go to Alder Hey on Tuesday for a scan to see that she is still all clear. We send our Prayers that she is. After that we went to "Happies" for dinner again, however I was so busy playing with my new toy that I got in trouble for not eatting all my dinner again! Looks like Happy is still Grumpy! Night, night everyone Love Connah x
Posted on: 25/04/2007
Hi everyone. Today was another gym day when we ran, bounced snd crawled all around and had a smashing time. When we got home I had a quick bath and dressed so that I could go and have my picture taken with Katrina next door. She was all dressed up to be a Bridsemaid at a Wedding. She looked fab (check out the pictures). The rest of the day I played with Nana & Grandad until Uncle Tony and Auntie Linda came over from Stockport. I had a good play on the floor with Uncle Tony and my cars and then he had to watch cartoons until dinner was made. They brought my Nana a Birthday present, but its a secret until her Birthday tomorrow! Night, night. Love Connah x
Posted on: 25/04/2007
Hello everyone, Today Auntie Rhian (Clic Nurse) came and changed my dressing, she has put an extra large one on so that it covers up all my Power Rangers (Hickman Central Line)so that I can go and have a swim in the time before my next Chemo. She had a long chat with Nana and Grandad about future treatment, I know that they are worried but we will get through it. This afternoon I went to Kids Club with some of my friends and had a great time playing. Nana and Grandad were busy having the Commity meeting with all the people who volunteered to help run my appeal. They are Auntie Heather, Auntie Sara, Auntie Nikki, Auntie Marie and Auntie Dawn. Nana told me that the Ladies from my Little School (Daisy Chains Nursery) are also doing a Great job at organising things for my Appeal. They will be organising events to raise donnations and Grandad will put a schedule on my website of what is planned. Later on I went round to my friends Katrina & Daniels house for a play. I was good and had all my dinner when I came back. Its very late and I'm still awake as I have lots of energy, not like Nana and Grandad! Thanks to everyone who is sending donnations to help me xxx Night Night Love Connah x
Posted on: 25/04/2007
Today Grandad said that the phone was melting as there was that many people phoning to see how I was and what the news was. He didn't mind it just stopped Nana fronm doing all of the ironing, so Darylann came round to help her out. I had my friends round today to play including "Hotlips", but Grandad kept a close eye on us so no chaped lips tonight. Had some pain in my leg and knee tonight, but Nana rubbed it better and the pain soon went. Night night everyone and thanks for the messages. Love Connah x
Posted on: 25/04/2007
Yesterday Nana, Grandad and Auntie Heather went to see my Dr in Alder Hey to ask about my scan results. The news was not as good as they had hoped for. Once again the Chemo had not really reduced the size of the tumour's by much. The good news was that nothing was growing inside me. The Dr said that she would give me one more round of Chemo and then they would harvest my Stem Cells, this would mean me being in isolation in Alder Hey for about 3 weeks. After that they have said that they will have some more tests and then tell Nana, Grandad and Auntie Heather what they think should happen next. But the day was not all bad news as Nana caught me kissing with a girl, but I'm not telling who!!! Night night, Love Connah x
Posted on: 25/04/2007
Had a nice visit today from my Auntie Ellen, cousin Pheobie, Barbera and Beth. We played loads of stuff and then went out and had lunch at "Happy's". Happy ended up Grumpy as I didn't eat all my food! Later in the day I was playing on the garden with Katrina and Danial, I fell over and made my nose bleed. This made me upset as last time my nose bled they couldn't stop it and I had to go to hospital in an ambulance. I was okay this time as Grandad stopped it. I am now tucked up in bed watching Bob the Builder and drinking special milkshake. Tomorrow is a big day as we are going to see the Consultant about my last scans and future treatment. Night night. Love Connah x
Posted on: 25/04/2007
Today started with Grandad giving me my medicine which I hate. The first one I drink which is not too bad, but the second one is a yukiii yellow cream which Grandad rubs around the inside of my mouth, while he does this I squeeze Nana's fingers till she screams, so there is a bit of fun in it! My legs hurt a little bit from the gym at weekend but I really enjoy the run around. It is Daniel next door's Birthday today so I took him round a present and a card. I went and saw Auntie Sarah and my pal Tommy as they were in the field looking at their horse "Rum". Then they came back for a drink and we had a play. Tonight I am watching out for Daniel coming home with his Birthday cake, hope we all get a piece! Love Connah xx
Posted on: 25/04/2007
Today I went to the gym with Grandad and Nana, we had a Great time running around with the other families and doing exercises. Although I'm ill we think that its important to still keep doing stuff and getting the musceles working and the blood flowing. Later on we went to visit a very nice Lady and Gentleman who made a donation to my appeal. They understood my situation as they had had exposure to the disease a long time ago. I played with some toy squirrels in a house.