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.

Wednesday, 13 March 2013

Today Ryan is being discharged to the parents house here in Germany.  Good news I know but for some reason I feel more anxious than excited.  Now he has to eat to maintain his weight, now he has to drink a minimum of 600ml a day.  He has a continuous infusion giving him the essential vitamins and minerals that he is loosing through his kidneys, via a portable pump.  He is far from being well but he is pleased to be leaving hospital after 6 weeks, although the doctors and nurses have all been fantastic.  Every day we will need to come into hospital to the day clinic for a new bag of fluid, for IV antibiotics, GCSF and blood tests.

On Monday we were told that the adenovirus that was in the stool has now also been found in the blood.  The blood test was taken last monday, and at that time the levels of virus were classed as low.  This is a huge concern, as this can be a very aggressive virus, and Ryan's t-cells (which are needed to fight the virus) are still being very suppressed by the numerous medications he is on.   The result of virology tests take several days to analyse and so you only know the situation days ago and not the current situation. 

Ryan blood counts, that had been stable, have started falling again.  We are struggling to get the levels of the immunosuppressant drug (tacrolimus) right, we have to reduce this drug slowly but currently it is still having too much of an impact on his blood counts.  He has need a blood transfusion and platelets in preparation for a further treatment of Extra Corporal Photopheresis (he now has two 4 hour sessions a fort night).

The doctors therefore took the decision to stop the daily IV anti-viral, as this also has an immune suppressing effect, and have further reduced tacrolimus.  Over the course of the next week this should allow the t-cells to multiply, they simply have to.  There is obviously a risk involved in stopping the anti-viral as this targets the HHV-6 virus that is also present in the blood.  The other worry is that if the T-cells multiply too quickly the GvHD will flare up. 

He has been having a drug targeting the adenovirus, every fortnight, and this involves an overnight stay in hospital as he has to have fluids before and after the drug to flush it out of his body.  His next treatment is next Monday and so he knows that he has to come back into hospital then but just for one night. 

Ryan has been feeling very homesick lately, he is tearful at some point most days, the last thing we need is for to get discharged and then to have to be re-admitted and so we are not making too much fuss about him staying at the parents house.  As you can imagine this is a very stressful time; I am trying to stop my insides freaking out but end up feeling like I am holding my breath.  We are trying to focus only on today, deal with what we know today, how Ryan feels today and not think about anything else.  

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