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, 17 October 2012

I spoke too soon

After writing yesterday's update we had some unexpected bad news, which has been confirmed today.

The dynamic of Ryan's t-cells have changed so that the majority are now his. This is a concern as his t-cells could be capable of causing his body to reject the new stem cells. However usually when the majority of t-cells are the host's the normal blood counts are low and not stable but Ryan's counts are still all great. So at present he is an exception to the rule but this may change.

The doctors are concerned but not panicking, they have seen this before but cannot predict the outcome or how long it will take to try suppress Ryans T-cells.

Yesterday the steroid and immune suppressant drugs were stopped to 'take the brake off' the new cells. Today Ryan was given an infusion of my t-cells which were frozen in the lab. (I wasn't even aware there were any frozen!) This will be repeated again every 2-4 weeks to try get control again. The flip side of this is that being off the steroid could trigger the fevers to return and the new T-cell activity could trigger Graft Versus Host disease. We will be monitoring him very closely.

This will delay immunotherapy and our return home but we can deal with both of these things.

We are in the best place to deal with this situation. Probably one of the best places in the world. We trust the doctors and know that they will be closely monitoring Ryan. But equally they respect us and dont hide anything from us.

We are obviously very concerned but will deal with this day by day and not assume the worse. There is a plan b, if plan b is needed.

Ryan is looking really great and i think is feeling less tired. Today he was a little upset that Jamie was going home, albeit only for about 10 days, and he wanted to know when he could go home too. So this afternoon we had to tell him we couldn't go home as soon as we thought, in fact we didnt know when we could go. We expected him to be upset or even kick off but instead he simply said 'That's fine, dont worry, after all there's nothing stopping people coming to see me is there!' We had to explain about school etc but you have to love his attitude. His spirit really does keep me going.

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