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, 30 September 2013

More good news and a set back....

First the good news: On Monday 16th September Ryan had bone marrow taken for analysis.  Today we heard from our consultants that Vienna have reported that both the bone marrow aspirates and trephines remain clear of disease.  They tested over 4 million cells and found no neuroblastoma.  This is again fantastic news.

Ryan had another venesection on the 12th September and blood tests show that his iron overload is starting to reduce.  Although his inflammation marker (ferratin) is still massively elevated it is a great sign that it has started to reduce after just 3 venesections.

And then the set back; I noticed over the weekend following my last update that Ryan seemed to be getting out of breath on his scooter and running around.  When he was in hospital for his GA the following monday for the bone marrow tests he was given a thorough examination and although his lungs sounded clear, his lung function had reduced compared to his previous reading.  He had no fever to speak of, although was a little warmer than usual and was off his food a bit too.  It was suspected that he had picked up a virus and that hopefully he would improve in a week or so.

Over the next week his symptoms seems to get a little worse in that even going up the stairs at home caused him to become out of breath and sit down to recover his breathing.  I also noticed that his rate of breathing in the night was much faster than usual but still no fever etc.  By last Monday I was feeling really worried and asked to take him in for another examination.  His consultant decided to send him for an x-ray and agreed that he was puffing quite hard even at rest.  He still didn't have a fever to speak of and as long as he didnt do more than sit on the sofa or walk around he seemed ok and was in good spirits.

Ryan's consultant gave it some thought and decided that it was most likely that Ryan had developed a form of pneumonia caused by a parasite, which can be common in transplant patients.  He immediately started him a high dose of anti-biotic and thought that he would need between 14-21 days of treatment depending on how he responded. He has now been on the anti-biotics for a week and in the past couple days does seem to be starting to become less breathless which is great to see.

This set back has meant that Ryan didnt get to attend his first hour session at school but we are really hoping that can be re-arranged in the near future.

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