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.

Sunday, 24 February 2013

Over the past week Ryan's stomach has slowly continued to improve, so much so that he did not open his bowels for over 24 hours and when he did it was not completely liquid.  As of today he can return to eating the 'clean diet' that he has been following since his transplant in September.  Although this is still restrictive it is a lot better than he has been allowed in the past few weeks and he is very pleased about this.  

His liver enzymes are still elevated but only 1 or 2 of them and not all, there is only minor evidence of GvHD on his skin and his mouth is slowly but surely improving although he can not taste everything yet.

Unfortunately the viruses are still present as they were last week; ADV in the stool and HHV-6 in his blood plasma.  He has been started on additional anti-virals to try and contain them.  The doctors are also keen to reduce the immune suppressing steroids as quickly as they can to enable his t-cells to multiply and attack the viruses and so in the past 7 days they have reduced the dose from 12mg twice daily to just 5mg twice daily.

Each time they are reduced Ryan gets a temperature, although it cannot be assumed that the reduction in steroids is the cause, each time it has to be treated as a potential infection.  It happened again this week and the doctors said the cause could have been one of 4 things: the reduction in steroids, the engraftment of the new stem cells, the virus or a bacterial infection.  Either way in the past 24 hours the fever is subsiding and the steroids have not needed to be increased again.  

It has been 11 days since the stem cells were infused but there is still no sign of his blood counts improving; today he is having a blood and platelet transfusion.  They usually appear 10-14 days after infusion and so we are hopeful to see signs of engraftment in the next few days.

Ryan is mostly feeling very tired, quite understandably. There is so much going on in his body.  But the doctors are very pleased with his progress and are still talking about possibly discharging him mid-week if he continues as he is.

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