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, 3 February 2013

Ryan's condition has slowly worsened since Wednesday. He was started on high dose steroids and these have reduced his fever to normal although the liver enzymes have showed a mixed response with some reducing and some increasing further. Since Wednesday Ryan gradually developed diarrhoea and has been feeling nausea most days, today he has started being sick too.

The tests have slowly come back negative to infection and so the Dr's think it is most probable that his symptoms are caused by GVHD, which could now be effecting the gut and mouth in addition to the liver. His mouth lining has turned white and started to break down in places (although he says it isn't painful just dry). The liver biopsy has been requested and should be done early next week to give a conclusive diagnosis.

He hasn't eaten since Tuesday, has been exhausted and sleeping on and off through the day. As he had been drinking well and was ok clinically (based on blood results) they said he could be treated as a day patient and not admitted. We have been going into hospital each day for iv medication.

However by yesterday we became increasingly concerned, as his diarrhoea worsened and he slept almost all day and so he was admitted to hospital at our request.

He has not been this poorly in a long while, even through this most recent transplant. It has also come as such a shock as only days before he had been ski-ing and having such well deserved fun. We are totally devastated but remaining positive that the Dr's will do all they can to improve Ryan's condition as soon as possible.

My stem cell harvest has been delayed by one week due to lab time for processing of the cells.

1 comment:

  1. So sorry to hear this news. Hopes and prayers he is feeling well very soon and that you receive good news on the GVHD. Hope Ryan is back to skiing and having fun in no time.