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.

Saturday, 4 August 2012

A change of plan.....


Ryan has continued to feel well, he is eating well and so looks the best he has in weeks – and is incredibly cheeky!  We have been seeing friends and family when we can but next week the tests start and so things will begin to get a bit more boring for him than they have been.

We had some shock news this week.  We heard from Tuebingen that they want to change the donor to me instead of Gareth.  We got an e-mail which simply stated that I was a better match than Gareth, me being an 7 to 8 out of 10 match whereas usually parents are 5 out of 10 or thereabouts.  

As you know we had originally been told that Gareth was the donor based on the fact that I had antibodies to a virus in my blood that could cause life threatening problems for Ryan during transplant.  Knowing this and then learning that they wanted me to be the donor caused us much concern until we managed to discuss this with our consultants.  Dr Lang, from Turbingen, has since explained that he feels that the risk to Ryan due to the virus in my blood is classed as Low.  There are also new, effective drugs that are available to control this virus during transplant.  It is also felt that the fact that I am a closer match to Ryan should reduce the risk of his body rejecting the stem cells and also reduce the risk of him getting graft versus host disease.  And so I am the donor.

Those that know me may even find this fact quite amusing, having heard the tales of me passing out on numerous occasions, mainly due to my needle phobia!  It is certainly not something that I am looking forward to doing but I will do it, I would do anything for Ryan …..but why does it have to involve needles and blood! And of course there is Ryan’s reaction – he simply said ‘Well, I am not happy!’ Then we explained what the doctors had said (as simply as we could) and that they know best.  He has accepted this change of plan but does get a bit tearful about it as he still doesn’t want me to have any needles (and he doesn’t even know how I feel about them!)

The fundraising is continuing to go well, thanks to the constant support that we are getting from friends and family and others that have been touched by Ryan’s story.  There was another article in this week’s Express and Echo – here is the link:
http://www.thisisexeter.co.uk/Kenny-using-pedal-power-help-Ryan/story-16632600-detail/story.html  The article focuses on Kenny Corrick who is cycling from John O’Groats to Lands End in just 7 days to raise money for Ryan.  Kenny met Ryan today when he called around to pick up some bits for a stall he is running at the Exmouth Festival tomorrow to raise awareness of Ryan’s appeal and of his cycle ride.  Gareth pointed out to Ryan that Kenny is cycling further than the distance that we will be driving to Tuebingen – but I still don’t think he quite gets just how far it is!  Kenny said that meeting Ryan has made him feel stronger than ever about what he is doing to help – he really wants to raise as much money for him as he can.  You can donate to Kenny’s fundraising with the following link:  http://www.justgiving.com/Kenny-Corrick or look out for him at the Exmouth Festival tomorrow (unless of course it’s pouring with rain!)

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