UCHL Update February

Welcome to My Diary

me at man city fc stadiumDance Comp Update
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
me commentating!Update
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
me at man city fc stadiumScan Results
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
me commentating!Last week at UCHL
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
me at man city fc stadium2014
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