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, 17 August 2013


Ryan clearly isn't afraid of heights!

Lately I have been very aware how lucky we are, so very lucky to be at home with our gorgeous boy.  

It has been wonderful to see Ryan doing normal things, he has been catching up with friends and family, although we still haven't managed to see everyone yet.  He has been enjoying days out at the beach, at Crealy, Pecorama, and the Minature Pony Centre, has visited his cousins in London and Southsea, visited Adam's family, as well as enjoying simply being home.  

He has gained almost 2kg since coming home in June and looks much better for it and his energy levels are slowly increasing.  He is loving his trampoline, his pushbike and scooter and has even been out on his motorbike a couple times.  I feel quite emotional seeing him doing these normal things - he has missed out on so much and we so want him to have a normal life.  It is easy to take things for granted when you start to get into a 'normal' routine but I am very aware how quickly things can change and how quickly your life can again be thrown into turmoil.  

In action on the zip wire
Medically Ryan is also doing well; his liver enzymes, although still elevated, are still gradually reducing, the full body MRI was clear, the CT scan of his lungs had improved and his diarrhoea has stopped.  His full blood counts are all stable in the normal ranges.  

Since the last update we haven't had any more autologus t-cell results as the cells had died by the time they were analysed in the lab in Tübingen and the next sample was not received - a further sample was sent off yesterday and hopefully we will have the results next week sometime.

Ryan has had 2 venesections (the removal of 120ml of blood to reduce the iron levels) and has had no adverse effects.  He is having immunoglobulin every 3 weeks (giving him an essential part of his recovering immune system as he is not yet producing any B cells) but apart from this is not receiving any other treatment.

Next month we are due to return to Tübingen for a review as Ryan will be one year post transplant.  Full re-staging is being arranged in Exeter and Bristol.  Re-staging is a horrid time.  Most of the time I can be rational and only worry about the things I know and not the things that might be, but sadly the fear of relapse never completely goes away.  

But next month is also Ryan's 7th birthday and so we are busy making plans for his party and looking forward to making his birthday a special one.