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.

Friday, 12 October 2012

Yesterday's clinic appointment went well, all of Ryan's bloods are good and he has started to produce T-cells, an essential part of his new immune system. We feel so lucky that things are moving in the right direction, and I really do mean that, there is always someone dealing with something worse and that is very much the case at the moment.

Mia, a little girl we see at the parents house who also has neuroblastoma, had her planned surgery 3 days ago to remove the residual tumour but after the operation a blockage in an artery cause her heart to stop. She was immediately opened up again so the surgeons could massage her heart while they looked for the blockage. This happened twice. This kind of news is devastating, she was always running around and was doing really well. Now her mum is waiting to hear if she will make it. When I woke in the night I thought of her straight away and said a prayer.

We also know that a teenage boy who had his transplant, from a matched donor, on the same day as Ryan is still waiting for his counts to increase to repair his ulcerated mouth and stomach and stop the attack of shingles that has reactivated.

Then there is the little girl in the isolation room next to Ryan's. She had a haplo transplant the week before Ryan but failed to graft and so she was given her own stem cells back and is still waiting for her own cells to graft. And a little boy from Ireland who I saw photo's of sitting in the pilot's seat on his flight to the USA to start immunotherapy but due to complications was immediately rushed to intensive care where he is stable but fighting his hardest fight ever.

So much awful, sad news which I cannot help but be effected by. We protect Ryan from this news and smile and joke like things are normal but right now lots of good news would be nice to hear.

1 comment:

  1. Much love, strength and courage to you all <3 xxx