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, 29 October 2012

It's not good news

Today's clinic appointment did not bring good news. Ryan's counts have all dropped significantly. His WBC is now only 0.5 when only a week ago it was 4.79, his neutrophils are 0.2 and HB and platelets have also dropped. Not the news we wanted but what we were trying to prepare ourselves for.

Gareth had a series of tests and examinations today, along with 24 phials of blood taken to check he is fit and healthy enough to be the donor. He will get the results tomorrow and I think he is pleased that he can finally help although didnt want these to be the circumstances.

Plan B as it stands at present is to admit Ryan to the transplant unit on monday to begin re-conditioning. This will involve a regime of chemotherapy and radiotherapy to his lymph glands, the latter targeting his t-cells. Ryan having to have more treatment is what upsets me the most, i cant even begin to put into words how i feel. I think part of how i feel is due to the fact that it was my stem cells that havent done the job that was intended, I know I am not to blame but still cant help that feeling of utter disappointment.

However Plan B will not commence until everyone is certain that the T-cells infused on the 17th have had opportunity to establish themselves and so a blood test to determine the origin of Ryan's t-cells will be done on Friday and urgently on Monday. The results usually take 5 days but I believe they will be expedited.

In himself Ryan remains well, still an x-box addict but we managed to steal him away from it on sunday and took him to the mountains to visit a castle where there was loads of snow! We had a tour and saw the armoury and the crown of the Prince of Prussia and Ryan seemed to find it interesting. After clinic today we went to a park and fed the ducks - always a favourite and Ryan scooted around the lake oblivious to everything going on. Exactly as it should be.

No comments:

Post a Comment