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, 30 January 2013
Monday, 21 January 2013
As at friday donor derived t-cells have reached an unbelievable 93%! The total number of t-cells per microlitre has risen from 50 to 205 in under ten days!
This is the best news we have had in a very long time and totally reverses the situation Ryan was in. The Dr now say there is very little chance of Ryan's remaining t-cells fighting back.
As usual this good news comes at a price as this massive surge in t-cells has caused Graft Versus Host Disease (GVHD) of the skin. At present this is being managed by both steroid and immune suppressant creams. The rash, which is on the front and back of his torso, is not much to look at but is itching so very annoying for Ryan. The Dr's had obviously warned us that this might happen as a result of the t-cell therapy and although a worry the thought of a further transplant was much more scary and unpredictable.
Although ideally we need to reach 100% donor derived t-cells before the Dr's can say categorically that the transplant can not be rejected, it is clear that the tables have now turned and no-one expects to see Ryan's t-cells for much longer.
The Dr's are keeping a close eye on Ryan's blood results and skin condition. His bone marrow is still very weak but once there are none of Ryan's t-cells left it is hoped that his bone marrow will recover. If it doesnt the plan would be for me to donate further stem cells.
Wednesday, 16 January 2013
Saturday, 12 January 2013
|Ryan and the instructor in a 'race'|
Monday, 7 January 2013
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|