Connah is now a Teenager

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me at man city fc stadiumHappy Birthday Connah
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
me commentating!Summer Holidays 2014
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
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