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.

Tuesday, 12 February 2013


The change in Ryan in the past 48 hours has surprised not only us but the Dr's too. His stool volume has reduced from 3.5 to 2.5 litres but the biggest improvement has been in the frequency of stool - this has changed from 30 minutes intervals to 4-6 hours! His mouth continues to improve daily. This week he will receive 2 further sessions of ECP and i thought i would explain what that involves:

ECP: Ryan is connected to a machine by his double lumen hickman line, blood flows out at a rate of between 15-20ml hour flows into the machine and is spun to separate white blood cells from red blood cells. The process takes between 2-3 hours depending on how the hickman is working. The red blood is returned to Ryan and the white blood cells are collected and then treated with light which is said to influence the behaviour of the t-cells. Once treated the WBC are also returned to Ryan. The treatment usually has an effect after 2 weeks, which is 4 sessions.

As usual it doesnt seem possible for us to have good news without bad. We learned yesterday that low levels of adenovirus have been found in Ryan's stool sample of last week. This is a very dangerous virus to a post transplant patient and so needs to be treated aggressively to try and prevent it spreading into the blood. Ryan blood and stool are tested twice a week to monitor the virus levels. We have been told it can stay 'dormant' in the stool and so we can only hope and pray that is the case for Ryan.

Today I had my stem cells harvested, the procedure went well with the exception of a temperamental needle what constantly needed repositioning. My white blood cell count was 62.2! (normally 1.5-5) at the start of the collection so it is expected to be a good harvest.

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