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, 4 February 2013

Ryan's situation is no better; his diarrhoea and sickness are both slightly worse.  His mouth is worse and looks the way it did when he had severe mucusitus, but this is most likely also GVHD, we are awaiting some final swabs results. The liver enzymes are still mixed although there are signs that the liver is very slightly improved.  His skin is better and there has been no itching for a couple nights which is one small bonus.

He is sleeping no more than an hour at a time day or night due to the constant sickness and diarrhoea. Last night he was started on a form of IV nutrition which gives his glucose, protein and carbohydrate but no fats as his liver is already under stress.  This will not give him 100% of his dietary requirements but will give him something. 

Today he has managed to stay awake longer than the past 3 days and this may be due to the nutrition. He has also spoken a little more today too - the past few days all he had really managed to say was 'sick bowl' and 'I need a poo' If you ask him how he is feeling or anything else he hasn't been answering but today there is a marginal improvement.  

Tomorrow they have arranged a biopsy of the gut as they say it is essential to be 100% sure of what they are dealing with GVHD and not another form of infection. This will be done under GA. They also still plan to take a biopsy of the liver later this week.  Once a diagnosis is secured they have several treatment options that they intend to put into action, we don't have full details of these yet but they all sound cutting edge treatments and are intended to speed up the recovery process.  That said we know how difficult GVHD is to treat and are unsure of any time scales. 

I will try and post brief updates frequently as I know that many friends and family are worried and prefer to know what is happening, we know Ryan is loved by many people and that he is in many thoughts and prayers.  

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