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, 24 November 2012

Still waiting....

Our first hospital free day this week was Thursday. we didn't do much, it's quite cold so Ryan had more x-box time and I caught up with washing and shopping etc. 

On a Thursday at the parents house, a lovely lady called Barbara who works here cooks for the parents.  She says it's part of her job but the amount of trouble that she goes to each and every week shows it is more than that.  The meals are lovely and it is the only evening where lots of parents from different families sit together and chat.  It is always a really nice evening,  the topic of conversation almost always starts with everyone reporting about how their respective children are doing, and nearly always not everyone has a positive story to tell, but we are all silently able to support each other, just by totally understanding how they feel, without them having to say the words out loud.

This week I helped with the preparation of a local dish, which I can't spell, but which was similar to a ravioli. It was nice to be taught something new although I'm not sure I could make it all from scratch myself!

Ryan then had blood counts on Friday and needed to have platelets, GCSF and immunoglobulin (which supports his poor immune system).  We were in hospital for about 4 hours but they were quiet in the day clinic for a change and things went very smoothly.  The doctors do not seem particularly concerned about the low counts this week, they say his white blood cells are still responding to GCSF and that this weeks chimerism still shows that 97% of his blood still originates from my donated stem cells.  and so we continue to hope and pray that the miracle happens and my T-Cells soon start to destroy Ryan's.

This past week we have also been very worried about our little friend Jamie, he started first course of antibody therapy here in Germany.  He had picked up a bit of a chest infection and so his original start date was delayed until the infection had gone but he had been off his food and didn't go into the treatment his usual lively self.  The antibody treatment was very tough on him, there are so many severe side effects all of which could also be attributed to other causes but are classed as 'normal' for anti body e.g. Low blood pressure, fever, cough, pain, low oxygen levels, high blood pressure - the list really does go on.  But then Jamie had a seizure early one morning, followed by another within the hour, he had a fever and initially this was thought to be the cause but Jamie was experiencing so many other symptoms at the same time that an emergency CT and lumbar puncture was performed.  The CT showed chronic infection in Jamie's lung, but then the following day an MRI of the brain was done as a virus was identified and it has been confirmed that he has signs of an infection in his brain.  At the same time as all of this Jamie has had GVHD causing a skin rash and this had appeared to worsen at the same time as his counts dropping.  It now seems that the majority of these symptoms are attributed to the HHV-6 virus.  Jamie has been moved back into isolation and has started a treatment targeting the virus - we hope and pray that he makes a full speedy recovery.

And then there is Adam, I know several of you follow his dad Nick's blog, I have found it difficult to mention what was going on with Adam as there was so much going on and so much uncertainty. But he is always in my thoughts.  He was due to return to the states for a further course of chemo and re-staging. But instead he spent weeks in hospital in the UK with unexplained fevers and pain making him unfit to travel.  Eventually, and after resorting to removing his line, the fevers subsided and he was able to return to the US where it was confirmed that his disease had progressed, as his family had feared.  He has been feeling really poorly and almost immobilised by pain for many weeks and has only started to feel better this past week.  He has started another new combination of chemotherapy and we want more than anything for him and his family to get some good news soon. Ryan still speaks to Adam at every opportunity and he has even persuaded his Dad to buy him an x-box so the two of them can go on an on-line rampage killing baddies! We are very much looking forward to hearing him screaming and shouting down the headset as soon as he feels well enough. 

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