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.

Monday, 7 January 2013

On Friday we got the results of the latest T-cell analysis and for the first time this showed that a small percentage (2.7% to be precise) originate from me! This is hopefully the first small sign that something is happening. Unfortunately this doesn't necessarily mean that my T-cells will overpower Ryan's, it is too early to know what the outcome will be and until the large majority of t-cells are mine the possibility will remain that Ryan can reject the transplant but this is still undoubtably good news.


Also on Friday Ryan was given a further infusion of my T-cells, the same amount as last time: 100,000 t-cells per kilo which actually means 1,900,000 cells! He also needed a blood and platelet transfusion and GCSF so it was a long afternoon in hospital. 

It is hoped that as Ryan's t-cells are destroyed that his bone marrow will recover and his need for blood products will gradually reduce as currently platelets are only lasting 3-5 days and blood is lasting 4-5 weeks. He is also needing GCSF injections every other day at the moment. As his consultant stated "improvement is needed".


Yesterday, as he was topped up with platelets and blood, we drove to the black forest for the afternoon. It is an hour and a half drive to the town of Feldberg and when we arrived we were a little disappointed at the piles of melting snow. But after asking a local we were directed another 10km up the mountain to a ski area where they had loads of snow! The difference in the landscape in ten minutes was amazing. Ryan spent a couple hours playing in the snow and tobogganing and after watching children in a ski school, has asked if he can have lessons. We've agreed to take him back later in the week when it's quiet and see if we can get him an hours session. 

Gareth is a keen skier and has always wanted to take Ryan ski-ing but when he was old enough he had relapsed. To miss this opportunity when it's so accessible would be foolish so as long as Ryan feels well and has sufficient platelets that is the next thing he can look forward to. 
The fenced off ski-school at the ski area in Feldberg

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