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, 13 May 2013

Ryan has felt quite well the past week and has been a bit more active, like walking from the room to the car, from the car park to the hospital, nothing spectacular but an improvement none the less.  He had 2 sessions of ECP (extra corporal photophyreresis) which makes him feel tired for the rest of the day but other than that seems to have been feeling ok, in fact better than he has in a long while.  The ECP treatment had been 2 sessions every fortnight but will now be 2 sessions every 4 weeks.  We are slowly reducing the immune suppressant and Ryan's t-cells are increasing without any adverse effects, at present anyway.  His blood counts are also increasing and his white blood cell count and neutrophils are now stable in the normal range for the first time in what feels like years.

This is obviously great news but although I am happy about this, I don't feel happy.  I have an overwhelming feeling of sadness because of circumstances that two families close to our hearts find themselves in.  I have thought so much about what I want to say here in this blog as saying nothing feels wrong, it has kept me awake at night, but it is simply too painful to truly convey how upset we feel about what is happening to both families.

Ryan has been very close to his friend Adam since meeting him in Greifswald in 2011, the boys had a connection right away and this has remained despite the fact that they don't get to see each other very often.  Adam has had to return home from the US due to complications with treatment.  His disease has not responded.  There is no more treatment out there.  In himself Adam is doing ok, he still has his defiant streak, his quick witted put downs to his Dad and Gareth if they monopolise FaceTime.  He and his family are constantly in our thoughts. 

During our time in Tübingen we have become friends with another family who are now in similar circumstances. This weekend we went to Munich to meet up with Tobias and his family and another family that we have met here.  Tobias relapsed a couple weeks ago, his treatment also failed after what looked like really promising news a couple weeks earlier.  Tobias is 12 and understands his situation, again there are no more treatment options.  I can't really put into words the courage that he has shown dealing with this news, he has a list of things he wants to do and has had a busy few weeks.  This Saturday he watched a football match in Munich stadium, something he has wanted to for a long time. 

Please keep Adam and Tobias, and their families, in your thoughts and prayers.

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