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, 25 October 2013

All is well here, Ryan has recovered from pneumonia although still has a slightly lesser lung function than before he became ill but hopefully this will continue to improve in the weeks to come.  He has regained his appetite and put on some badly needed weight so looks and feels good again.  He had his first hour session at school on the 2nd October and really enjoyed it.  It was just him and his tutor working together in a room within the school but it was the closest to school that Ryan has ever had and a huge milestone for all of us.  There were no tears (from either of us) I just felt so proud of him as he walked to school with his tutor.  The following week he was less enthusiastic but still enjoyed the session and has now been four times and seems happy to finally be part of school.  He is joined by a couple of children from his class when possible and this will help him greatly, as working alone can feel like all work and no play! 

Here is the photo I posted on Facebook for those of you that didn't get to see it: 

Ryan still has the same issues that he came home from Germany with: an inflamed liver due to the toxicity of medication -  some of which he still needs; iron overload due to the numerous blood transfusions he has had over the years and still some of his own autologous t-cells lurking around; but none of these things have an impact on how he feels.  His full blood count has been stable and strong for the past few months and his lymphocytes are slowly, slowly increasing which should mean that his immune system is starting to recover.  All in all everything is good.

When we returned from Germany we brought with us a large folder containing copies of Ryan's medical expenses since the start of the year.  These have now been fully audited by NCCA UK, the charity that hold the funds for Ryan's appeal and without the support of whom our lives would have been so very different.  They have confirmed that Ryan's total treatment costs to date amount to £214,007. The total amount shown on just giving is showing as slightly more than this but just giving fees need to be deducted and some monies are showing on just giving but have not yet been received by the charity but the long and short of it is that we are very close to have raised enough to cover the monies outlaid by the charity.  This is a truly wonderful feeling and without the overwhelming support we have had from family, friends and everyone out there that was touched by Ryan's story this would not have been possible.  Gareth and I never dreamed that we would be able to raise this much money since March 2012 and I for one have been brought to tears on a number of occasions by the generosity of total strangers.  Ryan still finds it funny seeing his face on tins and posters in the local area and often points and says to people 'That's me!'  Thank you to everyone that has helped us, from the bottom of all of our hearts.

So what now? Any money raised in excess of Ryan's existing medical expenses, and any money raised in the future will remain in his appeal, to be used exclusively for any future treatment that Ryan might need.   We know that there are treatment options available in Tübingen and the US and that these would cost money.  But when the medical opinion is that Ryan is out of danger of relapse (say 5-10 years time) the money will be used by the charity to pay for the treatment of another child that is in urgent need of treatment outside of the UK.  Gareth referred to it like an insurance policy for Ryan, this is a good way of looking at it.  No one wants to claim on their insurance but everyone needs the security of knowing it is there, just in case.  
No one can predict the future and sadly there are no guarantees that this will be the end of treatment, that the vile cancer neuroblastoma will never rear it's head again.  After all Ryan has relapsed twice and we will never again take life for granted.

So our appeal for Ryan will continue, albeit without the urgency that we had at the beginning but knowing that we are giving him options should be need them. And, in the hope that he never will need more treatment, in the knowledge that the money raised in his name will help give a future to another 'Ryan' in the future.

Ever since Ryan was diagnosed we have learnt to live life by the day and enjoy every minute and that is what we fully intend to do. Here is Ryan today, seeing him looking so well is absolutely priceless: