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.

Thursday, 13 September 2012

Day -5

Its hard to believe we have been here 10 days. Apart from the first couple days of ATG, Ryan has so far coped so much better than we anticipated. He has now finished the 4 days of Fludarabin and tomorrow starts 2 days of Thiotepa, the second high dose chemo drug.

He is eating well and genuinely seems very happy. Today he skyped our local hospital and loved seeing all his lovely doctors and nurses. He said afterwards that he missed them all.

Want he really needs at the moment is a good nights sleep but it might be a while before that happens for any of us !

P.S. My injections have started and after waiting over an hour for a nurse to be free to inject me I decided to do it myself. Im sure that not many people enjoy injections and I will count myself among the majority who dont but all I had to do is think of all the wonderful brave children I have met over the past few years to realise that the little part that I play in all of this pales in significance compared to what they have been through and are still going through. A shining example being my wonderful son.

No comments:

Post a Comment