Ryan is an extraordinary boy; he is now 15 years old and in his third complete remission from Stage 4 High Risk Neuroblastoma. In September 2012 Ryan received potentially life saving treatment which was not available to him in the UK. This was made possible by the charity Solving Kids Cancer (formally NCCA UK) together with fundraising support of our friends, family and the general public.
Ryan's story
Ryan was diagnosed with Stage 4 High Risk Neuroblastoma N-MYC amplified in July 2008. He was out of treatment for just over a year when in November 2010 our lives were again turned upside down when we discovered the disease had returned in his bones and bone marrow. After a year of treatment re-staging scans in November 2011 showed that he had again achieved remission.
However just 3 months later, in February 2012, end of treatment scans gave us the devastating news that the disease has returned, this time with a tumour near his spine. In March Ryan started 4 weeks of radiotherapy followed by chemotherapy. Re-staging scans in May and August showed no evidence of disease. On the 4th September 2012 Ryan received treatment in Tubingen for a haplo-identical stem cell transplant. He is a happy, active boy who is now enjoying life to the full.
Tuesday, 24 December 2013
We wish you a Merry Christmas
Tuesday, 10 December 2013
Ryan's even bigger Christmas Surprise!
Gareth, Ryan and I meet Miles Leeson, Beccy Shields and Luke Tillen at Peak Performance Gym in Torquay |
There is a bit of a story behind this amazingly generous gift: Miles ran a 12 week challenge at his gym with a chance for the winner to take a trip to LA to train in Gold's Gym. Unfortunately the winner, Beccy Shields, was unable to take the holiday and so Luke suggested to Beccy that they change the holiday to Euro-disney and offer it to a family through Luke Tillen's charity Torbay Holiday Helpers Network. The charity then got in touch with the CLIC Sargent team at the Royal Devon and Exeter hospital and Ryan's name was put forward....
We found out that our family had been chosen for this wonderful holiday about 6 weeks ago but managed to keep it secret from Ryan, just in case something happened and we couldnt go. We have been having secret phone conversations with Miles and Luke over the past few weeks but yesterday Miles got to tell Ryan that he was going to Euro-disney this Friday!
For once Ryan was lost for words - he said Thank You lots of times but you could tell it hadnt really sunk in, he has heard his friends talk about disneyland and has asked before if he could go one day but there had never really been the opportunity. Miles showed Ryan lots of photo's of Euro-disney on the website and when he was asked what he was looking forward to the most his reply was 'All of it!'
In the car on the way home I asked Ryan how excited he was as he was a bit quiet and he said he was afraid to get too excited as 'things dont always work out as planned'. Dear little man has been so just to disappointment but I reassured him that he could get wildly excited as this was definitely going to happen! (And I promise to post some photo's while we are there!)
And now we are counting down the sleeps! 3 sleeps to go!! Huge thanks to Miles, Beccy and Luke for making our Christmas magical and Ryan's his best EVER!! We really can't thank you enough xx