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, 13 September 2013

It's been quite a while since I last updated and that is partly because I hate writing an update when we are waiting for scan results, I am afraid if I write something positive I will be 'jinxing' the next thing I write but yesterday we got the news we had been waiting for.

Our consultants here in Exeter made contact with the team in Tübingen a few weeks ago and provided them with an update on Ryan and at our request asked if they were happy for the review planned for next week in Germany to be carried out in Exeter/Bristol - they agreed and so we can stay at home.  Ryan was really excited to hear this news although did say 'but that means that I won't get to see my doctors and nurses in Germany'.  We really do have a very good relationship with the team there and have every intention of keeping them up to date with Ryan's progress.  

Ryan has celebrated his 7th birthday and in his usual extravagant style decided on a laser combat party which we arranged for the saturday after his actual birthday.  Then the day before his birthday he decided he wanted to do something on the actual day and so off to Clip and Climb with a few friends we went.  He had a great birthday and really enjoyed his laser combat party despite the fact that it rained the whole time.  We were surprised at how well he coped running around the woods carrying a laser gun but he surprised us all - although was understandably exhausted the following day!

In between his birthday and the party we had to go to Bristol Children's Hospital for an MIBG Scan (to detect the presence of any abnormal cells or bones.) This scan is done over 2 days and so we spent the night in our usual room in Sam's House (a CLIC sergeant home from home) Ryan feels really at home in Sam's house and seemed to quite enjoy being there again.  Yesterday we heard that the scan was clear which, for me at least, was a huge relief.  Nothing can be taken for granted and never will be.

We have also had some results from Tübingen about Ryan's autologous t-cells: after two lost samples the third sample was processed and confirmed that they have reduced from 10% to 8%, another positive step.  

Another really positive step, well huge milestone, is that we have had a meeting with Ryan's school to discuss how he can be integrated into school.  To summarise a very productive meeting between the school, the hospital and myself it was decided that Ryan will not be able to join his classroom at the present time due to risk of infection from the 90 children he would be exposed to in the open style classrooms and the school policy regarding children with fevers.  However the school were keen to include him and are looking to find a suitable room where he can have his one-to-one tutor sessions with this current tutor.  Currently all such rooms are fully utilised but it is hoped that over the next weeks/months this will change and Ryan and his tutor can use a room at the school and be joined by a small group of hand picked children from his class.  He currently sees his tutor 2-3 times a week for an hour and a half each time.  So we have a long way to go before a full day at school can be achieved but at least we are again making small steps in the right direction.

Ryan really wants to go to school and be 'normal' but understands why this is not currently possible.  He is missing his friends now that the school holidays have finished but has learnt to tell the time and plans his day around 'when the kids come home'! Gareth has been back to work since we came home and I try and keep Ryan occupied at home, which is not always easy as we don't like him to be on his x-box too long.  But from a selfish point of view I feel very lucky to have this extra time at home with Ryan and plan to make the most of it. 

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