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 June 2012

Ryan had a blood count last Monday morning and luckily his neutrophils, with a bit of help from GCF on Friday, had recovered sufficiently to start his third cycle of chemo.  This time he is having irinotecan and vincristine in the hope that his bone marrow will not be so knocked by the drugs.  This meant a trip to hospital every day, on the Monday he had both drugs and Tuesday to Friday he had irinotecan.  He was noticeably tired during the week but still refusing to sleep in the day or go to bed early. He has felt quite sick at times and so really wasn’t keen to eat anything much despite 3 anti sickness but they must have worked because he wasn’t actually sick.  Usually by tea time though he would be able to eat his dinner, which is normally spaghetti bolognese – thank goodness that he still enjoys his old favourite.  This time he also experienced jaw and back pain which are side effects of vincristine and occasional tummy ache. We continue the anti sickness on a couple days after he finishes the chemo and stop it on the Monday, today.

This weekend though he had his friend Josh’s birthday party treasure hunt at Haldon Forest and Ryan really surprised us by running around the forest looking for clues just like the other children.  He couldn’t always keep up but didn’t want a carry until almost the end, about 2 miles later!  Seeing him having fun is always wonderful and being able to go to parties is even more special as Ryan has missed out on so so many.

Then right after the party his mate Adam and family arrived for the weekend which was great, as Adam has wanted to check out all of Ryan’s toys for a long time.  We had thought it might be a quiet weekend, as both boys are having chemotherapy, but they crammed quite a lot into their time together; power rangers, x-box, wii, bouncy castle in the garden, footie in the park and a trip to the beach for crazy golf and a game of dodge the wave. Shame we didn't capture the moment where Adam got soaked!  It was a great weekend and we hope that we can get together again before too long.

This week should be a better one as far as side effects go but will probably mean GCSF injections to boost Ryan’s neutrophil count and maybe a couple trips to hospital for a blood and/or platelet transfusion.  The only problem is that now Ryan is feeling like doing something and seeing people nearly all of his friends are at school and so he doesn’t really have any one his own age to play with and regretfully I have to say that playing with mum or dad just doesn’t cut it anymore.

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