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, 24 September 2012

Day +6

There hasn't been much change since my last update - Ryan's pain in his mouth and throat is no worse and still controlled by a continuous low dose of iv morphine, his temperature is hovering between 37.5 and 38.0, his counts are rock bottom but he is doing ok.  He is drinking but not eating as his throat hurts when he is eating and his tummy is very upset from all the anti-biotics. He has been a bit more tearful the past couple days and is very bored of the hospital routine of disinfecting strip wash and moisturise, bloods, new lines, laser therapy, blood products, constant iv medication, blood pressures, electrodes, SAT's monitoring.  We really can't blame him, it is monotonous but for us that is a good thing - we don't want any drama, we are happy with plodding along in this critical period while we wait for his new stem cells to graft.  Still it isn't easy to explain that to a 6 year old who can't comprehend how pleased we are that he is coping so very well.

Having said that last night his pulse was high and his blood pressure was low while he was sleeping and so a doctor was called to check him over.  His blood pressure was taken every 15 minutes from 8pm until 1am when things seemed to settle down and then the monitoring reduced to 2 hourly.  Luckily Ryan was totally oblivious to all of this and had a reasonable sleep.

The doctor looked over his blood results today and said they were perfect but there are no new cells as at this morning, it is still early days but that doesnt stop us wishing for them to appear....

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