UCHL Update February

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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
me commentating!New Year Very Sad News
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
me at man city fc stadiumSummer Update
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