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.

Thursday, 21 July 2016

It's been a while

I am no longer in the routine of updating the blog, but this can only be a good thing.  It has always been an emotional thing to do, something that I need to be in the right frame of mind for but recently, after seeing several stories of children with relapsed neuroblastoma, still being told that there is no hope, no options, still being asked if they wanted to simply take their child home and make the most of them, I have felt the need to do an update, just in case Ryan's story can give someone else hope.

It's been nearly a year so where to start, firstly Ryan continues to be well, so to pick up from where we left off he decided on a kayaking party for his 9th Birthday party - he invited lots of friends and had a great time.  He went back to school on the first day of the new school year, which is a first I think.  His tutor had been gradually reducing her time with Ryan over last summer and by October half term she withdrew completely as Ryan has achieved over 50% attendance and therefore no longer met the criteria for her support.  Her support had been crucial to Ryan but he understood that her work with him was done and that she needed to support other children.

Year 4 saw Ryan increasing his hours to stay to the end of the school day, he joined after school clubs Fencing, Sports Skills and Green Team, he had weekly swimming lessons with his class mates, he excelled in his learning and is now confidently holds his place amongst his peers, even being joint first in his class in a recent reading test.

In the Easter school holidays we took Ryan away skiing with our good friends, the Bird Family who joined us for their first ever skiing holiday and Ryan's cousins also joined us.  Only one person could have made the holiday even more special, what we would have given for Adam to be there with us, but he was with us in our hearts.

In May Ryan went away on his first residential school trip, sleeping in a Yurt for 2 nights!  He was very apprehensive about it (and so was I!) but despite his anxiety about being away from home he went, and took part in the whole experience with all his friends.  He felt very pleased with himself and really enjoyed it, his favourite part being making homemade pizza with veggies that they picked from the vegetable garden.

The enormity of what Ryan has achieved academically is reflected in his wonderful end of year school report, which reads just like he has never missed a day of school.  To say we are proud of him is an understatement.

Earlier this month we were invited to Chessington World of Adventure, with the charity Hugs for Henry (founded by the family of another child who has had Neuroblastoma).  The charity invited lots of children who have either had treatment or were having treatment for cancer and Ryan had a lovely day going on all the rides.

Medically Ryan see's his oncology consultants every couple of months, he has suffered with reoccurring eye infections after contracting adenovirus in his eye last summer.  This has lead to a diagnosis that he, in fact, has a blocked tear duct and will unfortunately need an operation to construct a new one.  The operation does not sound very nice at all but is the only way to deal with this problem, and to cure the eye infections.  We have delayed the operation until end of September/early October as Ryan wants to enjoy the summer with his friends after missing out on so much last summer when his eye first became infected.

He still has an iron overload and so continues to have venesections every couple of months to reduce the iron in his body - this week he had 100ml of blood taken and managed to cope with the cannula with no tears for the first time in months.  He also has regular lung function tests to monitor function, as his lungs are impaired due to all his treatment - not that this seems to effect him on a day to day basis and still meant that he thoroughly enjoyed the 4 races he took part in on Sports Day!  His MIBG scan last May turned out to be the last scan that he will have routinely.  The decision was made with our agreement, and although not an easy decision to make, we have to accept that we cannot continue to scan indefinitely and so another milestone was reached.

Today Ryan broke up from school and we are now looking forward to the summer holidays and to a family holiday in Menorca, the same resort that we went to 2 years ago.  And then before returning to school, it's time to plan Ryan's 10th Birthday - apparently this year Zorb football is on the list of maybe's...