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.

Thursday, 4 April 2013


Things have improved here since my last update. Most noticeably Ryan himself. The increase in hydrocortisone has greatly helped the GvHD of the skin and he has walked more this week than he has in the past month. There has also been an improvement in his appetite and he has started to feel hungry at times and is eating willingly again. His stool also seems to have begun to improve, hopefully this improvement will also continue. 

The liver biopsy didn't reveal any signs of infection or GvHD and is indicating toxicity of medications. We are still awaiting final results of virology tests, which will be a few more days, but it is hoped that the liver will gradually recover by itself. One of Ryan's medicines which is particularly toxic to the liver was stopped as soon as the enzymes started to rise, over the past few days these have started to fall and will hopefully continue to do so. 

The other change to medication is that Tacrolimus (the immune suppresent drug that is most effective against GvHD) was being gradually reduced and has now been stopped and replaced with a less aggressive immune suppresent (Cellcept).  This will hopefully mean that Ryan's blood pressure and kidney problems should start to improve - in fact just days after stopping the drug his blood pressure medication has been reduced from 4 times daily to twice daily which is a really positive sign.  Once his kidney's start to function properly he will no longer need the continuous infusion of electrolytes.  For Ryan this will be a huge benefit as the bag contains one litre of fluid when it is replaced each day and is simply too heavy for him to carry around in the special backpack provided with the pump.  Fingers crossed we will see this improvement soon.

The IV anti-virals will continue until the full virology is reported which means that Ryan has a 2 hour long infusion each day when we come to clinic for blood tests and a new bag of electrolytes. At best we spend 4 hours in clinic. Ryan is totally fed up of hospital, he hasn't had one hospital free day for over 2 months and it is taking its toll. He is not his usual happy go lucky self and is tearful about being connected which is most unlike him. Some days, when additional medicines are required, we can be in clinic for as long as five hours, combine that with a scan or ECP therapy and the whole day is gone. 

But next week Ryan's eldest cousins arrive for a visit with my sister Jackie and this is something that he is really looking forward to.  Fingers and toes crossed that the improvements we have seen this week continue and he enjoys his time with his cousins, despite the fact that most of the days will be spent in hospital.

No comments:

Post a Comment