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, 25 April 2013

When I start to write these updates I always try to keep them short, but that never seems to happen lately. Ryan has had so many different issues going on, all of them equally significant.  But gradually Ryan's condition is improving.

Since the last update his liver enzymes continue to slowly reduce, indicating that the inflammation due to toxicity is reducing, his blood pressure medication was stopped and his blood pressure has remained within the normal range, his electrolytes have been stable without the continuous pump, the oral medication to supplement electrolytes is slowly being reduced, his hydrocortisone is now back to the normal level and the autologous t-cells (originating from Ryan's original immune system) have reduced from 13% to 6%, and as at Monday's blood test there are no viruses in his leukocytes or blood plasma - all of these things are huge steps in the right direction.  

Loosing the pump has given Ryan a real boost, he has the freedom to move around although not the energy to do so.  He has lost a total of 2.5 kg, he never had much fat to start with and so most of the loss is muscle.  He is painfully thin and due to the GvHD of the stomach we have had to give him low fat food.  Now though his stool has returned to normal and so we can start to introduce foods to help him gain weight, it is a case of try it and see what his stomach thinks of it.  

We have come to realise that the recovery from GvHD is going to be a slow process.  We don't see improvement in Ryan daily but as each week goes by he is better overall than the last.

His mouth and skin still show signs of GvHD although both are much improved. He still has the HHV-6 virus in his mouth which causes some inflammation and blisters but surprisingly these don't bother him too much. He still has a cough too, it now sounds very loose but there is nothing in his lungs, the doctors think it could be inflammation of the mucosa (lining of the throat) but the cause is not known.  As he has no fever or infection marker it is currently not being further investigated (as the original CT scan was clear and his lungs are listened to daily) 

In himself Ryan is a lot happier than a few weeks ago, the visit from his auntie and cousins had the desired effect and really cheered him up, and although he still desperately wants to go home he has stopped being tearful about it.  The weather has improved and the sun has come out and so it hopefully won't be too long before he feels up to doing some gentle activity outside.  

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