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, 18 February 2013


As seems usual that I have good and bad news but overall we are still feeling positive about how things are going here in Tübingen.

Ryan has continued to improve each day and now is only experiencing watery diarrhoea once or twice a day, at its peak it had been over 3.5 litres and is now under a litre.  His skin and liver enzymes both got worse towards the end of last week but are now starting to improve again.  This may be in direct response to the reduction of the steroids, but they have been reduced again today and so we will see what happens.  In Ryan himself though we have seen the biggest improvement, he has been able to stay awake more, is his usual happy, chatty self and is hungry and wanting food.  In fact the wanting food part is a bit of a problem, as his stomach is still repairing and not really ready for food.  He is allowed to eat plain, bland food, which is low in sugar and fat, no vegetables or fruit.  Ryan is struggling to understand why eating is all of a sudden not something that is being encouraged.  We have explained time and time again why and that this is just a short term thing, while his stomach heals, but with a hunger driven by steroids, Ryan feels like he is going to 'starve to death, like his character on Minecraft!' In fact he is drinking a special drink, an 'elemental' feed which is already broken down so that it can be easily absorbed by his stomach and gives him everything that he needs but this isn't the same as actually eating.  Overall though the doctors are extremely happy with him and are talking about switching some of the IV medicines to oral, and if his progress continues, will talk about discharging him to out-patient treatment sometime next week.

But the bad news; the virus (Adenovirus)  has shown up in his stool again, and now there is also another virus (HHV-6) in his blood. Both can be very serious to a post transplant patient but at present neither seem to be causing symptoms or problems and so we continue to hope and pray that this is continues.  Once the steroids are reduced further and his immune system is less suppressed the hope is that his t-cells will deal with these viruses.  

We are taking things a day at a time, as we know only to well how quickly things can change, but for today we are feeling positive.

1 comment:

  1. Keep fighting little Ryan! You guys have an amazing son. xxx

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