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 which is on-going. 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.

Wednesday, 4 July 2012

Last week was quite quiet for several reasons, most of Ryan's friends being at school, the awful weather and partly due to the fact that Ryan was tired after a week of chemotherapy.  Although he refuses to give in to tiredness, we can tell he is not himself.  His tutor came as usual for 2 sessions and our friend Clare kindly asked for permission for his friend Alfie to have time off school to see Ryan as he was missing seeing his friends. And so on Thursday afternoon Ryan, Alfie and his younger brother Wilf had a trip to the Living Coasts in Torquay to see the penguins and seals but mainly the boys just had a good time in each others company and ran around the place mucking about.

Then at the weekend Ryan had a real treat as he was invited to visit Exeter Airport and see the Red Arrows! Ryan and Gareth went along and even got to see the pilot and got up close to the jet. Ryan asked lots of questions and came home the proud owner of a goodie bag with a signed poster.

Here he is with Red Four, Flight Lieutenant James McMillan.

Last week and this week Ryan has needed GCSF injections on and off to force his body to produce neutrophils, and this week has also needed both a platelet and blood transfusion, which he really needed as his HB was quite low and so he feels better today. He also had a 'Ben transfusion' as seeing his friend Ben seemed to have the same impact as a bag of blood and he was running out of the house to the park for a game of football! Tomorrow his girlfriend Ella is also leaving school a couple hours early to spend the afternoon with Ryan at Crealy which he is really looking forward to.

Although the school holidays are coming up and it will mean he can see more of his friends it also means that Ryan isn't able to go to as many places as they are full of children and although he would love that, the increased risk of infection at a time when his immune system is almost non-existent means that he can only really see them at their house, or at home. It also wont be long before we are off to Germany and so he wont be able to see any of his friends for several months - this is going to be very hard on Ryan as he is such a sociable boy and so we are cramming as much as possible into the remaining time that he has at home.

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