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.

Tuesday, 11 September 2012

Day -7

Have some unexpected time to myself so can write update while Ryan is having a session with a teacher - they asked him if he would like to learn german words instead of reading english books and he jumped at the chance and told the teacher reading is boring!

We both had a bit of a rubbish night, less fluids but still 100ml per hour - 24 hrs a day. This is because the drugs Ryan is having are destroying cells in his body, when cells die they release uric acid, when many many cells die the amount of uric acid can damage the kidneys. So the fluid is to ensure the kidney's are flushed, in addition Ryan is also given a drug to make him wee frequently. Last night his nappy leaked at 10, 12, 2 and 5 plus he also woke for a wee in between! He refused to bother to go back to sleep after 5. He said whats the point! Tonight we are trying some additional padding in the nappy but today is going to be a long day.

Hopefully though he will feel well like yesterday and we have even managed to get x-box live working and so when his friends are home from school he can play on-line with them.

We were amazed to learn the Vanessa, one of the other children from the UK, is being discharged to the parents house this afternoon after approx 4 weeks in isolation! Jamie, the other english child, is doing ok although was hopefully at his lowest point yesterday with mucusitis and several other unpleasant side effects from treatment. Although he is on morphine he is coping and the doctors are hopeful his new stem cells will start to graft in the next few days. Their experiences are very encouraging for us to hear but nothing can be taken for granted and they all still have a long way to go.

1 comment:

  1. Guten Tag is all I can remember from my German lessons! Good to hear news on Vanessa and that Jamie is coping too. Thinking of you always...Jackie xx