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, 14 February 2013

On Tuesday they collected a total of 8 million of my stem cells.

They have been processed to separate as many t-cells as possible from the stem cells but anticipate that a few thousand will remain. They say that these additional t-cells will not accelerate the GvHD in their experience.

Yesterday Ryan received 4 million of these cells via his hickman line. The remaining 4 million have been cryopreserved. The purpose of the stem cell infusion is to give Ryan's bone marrow strength. His bone marrow, which has originated from my donated stem cells since the transplant in September, has been attacked by his surviving T-cells for several months leaving his counts very weak. These new stem cells will find their way to his bone marrow, engraft and develop into either platelets, HB, white blood cells etc.

This should then reduce his dependency on blood products and GCSF. However occasionally active GvHD can continue to cause thromopenia (low platelets) but if this is the case the additional cyropreserved stem cells can be used once the GvHD is controlled.

The frequency of Ryan's stool continues to be much improved - approx 4-5 times in 24 hours but the volume is still quite high. Each one being approx 400-500 of black looking water. He is very tired and weak but managing to play the x-box each day and speak to some friends

He is asking for food but his stomach cant really tolerate food yet. It is so hard telling him he cant eat when we have spent years encouraging to eat well. We are going to chat to a dietician and see what foods they suggest at this stage. I dont think spaghetti bolognese wi be one of the options though....

Ryan steroids have been reduced from 40mg daily to 30mg as these cause the most immune suppression but already his skin and liver enzymes are slightly worse and if this continues they may need to be increased again.

And lastly some very good news: the stool sample from monday is negative for adenovirus which means the virus is below the level of detection . They suspect that Ryan's t-cells have dealt with this virus as the anti-viral drug was to try and prevent the virus spreading.

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