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, 7 December 2012

Update on Ryan

Not much has changed with Ryan's situation of late which is why I haven't specifically mentioned it.  His counts remain poor but he has not rejected the transplant, but his body is still trying to.  He is needing GCSF (which forces his body to produce neutrophils to fight infection) every 3rd day and is needing platelets about once a week, we are heading towards another blood transfusion too as today his count was 7.7.  Blood seems to be lasting about 3 weeks.  All in all he is relatively stable at rock bottom! However he feels well and is still eating and drinking well.  He actually weighs more than he has every weighed which is unbelievable considering he has a transplant just 3 months ago.

It has been snowing in Tübingen the past few days and the city is covered in a blanket of snow.  We built a huge snowman in the garden of the parents house yesterday and as the snow has continued to fall all day today Ryan has persuaded Gareth to buy him a toboggan with a steering wheel so that he can go tobogganing and cause me even more stress!!

Our little friend Jamie has remained stable the past 48 hours which has been good news, we know that he is still very poorly but stable is good and gives his body chance to fight the virus that was the initial cause of his problems.  We did have some other good news this week, Marco, a teenage who had his transplant on the same day as Ryan and who failed to graft has finally gone home after almost 3 months in hospital! The anonymous donor agreed to give a second donation of stem cells which grafted and essentially saved his life.  It takes a very special person to give such a gift to someone that they have never met, and I think that one day the family will be able to thank them in person if both parties are willing to meet.

1 comment:

  1. Must be so frustrating in a way being in such a limbo for so long, but I guess overall he is in remission, he is well in himself, you are all together - which is all the important bits ticked off...I guess the biggest downside is that you are stuck in another country not knowing what is going to happen next. Thinking about you guys a lot.

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