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, 25 November 2013

Another month closer to Christmas!

Well the past month seems to have flown by. Ryan is well and we have only had one hospital visit since the last update, when Ryan had venesection (blood draw to reduce the over load of iron) and immunoglobulin (to support his rubbish immune system).  We now only get blood results every four weeks - when we came home in July it was twice weekly, you get dependent on these results, its like a full MOT and having such a long period between results has taken some getting used to.  The most recent results have all been good - Ryan's ferratin level (which measure the iron overload) and liver enzymes (which reflect the inflammation in his liver due to toxicity of medication and iron overload) are both at a record low since our return home.  Both still have some way to go before they are in normal ranges but we are getting there.  His t-cells are slowly increasing but are unfortunately still very low and not high enough to stop preventative anti-virals and anti-biotics.  His lung function is again improving although the decision was made not to stop his inhaler or the medication for his airways at the moment.  We are just waiting for the latest result from Tübingen to give an up to date picture of his autologous t-cells, the last test was 2 months ago.....

All in all we are experiencing the longest period of normality that we have had in a very long time, which is both wonderful and weird at the same time.  Ryan is enjoying his sessions in school and as of this week he will go into school for 2 hours on a Tuesday and Wednesday morning.  He is joined by a small group of children from his class and really enjoys the sessions.  We have also incorporated the break time into his time at school although he is finding this a lot harder.  He is not used to being in the company of so many children, who are running around burning off some excess energy.  To him the running and chasing is frightening, as he is worried that if he joins in someone may grab his t-shirt and pull his central line.  And so he mostly observes what the other children are doing until a time that he feels happy to get more involved, but small steps in the right direction.

It hasn't helped that he doesnt really know anyone in his year and so when a couple of the boys asked Ryan is he was coming 'football after school' we found out about the after school football club and joined.  When I started this blog I said that playing in a football team is something that Ryan has always wanted to do - and he has always wanted to play on the school football field that we pass whenever we leave our house.  I felt very emotional seeing this become a reality, seeing his excitement running around the pitch, seeing him push himself to keep up with the others and managing to join in for the whole hour long session, he has even scored a goal!  He still amazes Gareth and I, and his consultants too!

It is hard to imagine that this week it is a year ago that, thanks to Make A Wish, we took him to meet his hero Travis Pastrana in Dusseldorf.  He now has the framed signed poster proudly on his bedroom wall.  Such a lot has happened since then and we feel very lucky to be where we are today.  This is the first Christmas in many years that we can actually look forward to, Ryan has spent the majority of Christmas' in hospital. And so this year, thanks to the generosity of 2 wonderful local charities, we are making plans to give Ryan a Christmas to remember, we are keeping the plans secret from Ryan until nearer the time but will be sure to share photo's.

Finally, and on a separate note, the charity that have supported us and that we fundraise with, The NCCA UK, has a national event starting in Exeter with Ryan.  Please come along and show your support to the NCCA UK's Cycling Santa's who start their 800 mile cycling challenge by delivering Christmas presents to children fundraising with the charity, starting with Ryan at the Toby Inn, Middlemoor, Exeter on Sunday the 1st December. The Santa's will be meeting Ryan between 9.30-10 am and we would love as many as possible to come along and see them off and if you needed another reason to get out of bed early on a winter's morning then how about a Toby 'all you can eat' cooked breakfast?  Hope to see you there......

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