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.

Monday, 25 February 2013

I talked a lot about treatments but I haven't really gone into much detail about how Ryan has been feeling in the last couple updates so thought I would take the time to try and put it in writing.  

I had said that Ryan is still very tired, although weak and exhausted would probably have been a better description.  He is thin and has lost muscle as he has been in bed so long.  

The need for him to be an in-patient has changed now that his stomach is repairing and can tolerate the medicines orally.  Most of his medications have now been switched to oral to enable him to be discharged to the parents house later this week.  He is on so many medicines, several of which have unpleasant side effects.  The most recent side effect to materialise being high blood pressure causing headaches which have also made him feel sick.

His treatment will continue though and it will mean that every day he has to come into hospital for either ECP or IV anti-virals, anti-body and/or anti-biotics.  Although it is a positive step it will actually be harder on Ryan initially.  He will need to drink a minimum of 500ml per day and will need to eat as his IV nutrition will stop when he is discharged.  His taste buds are not back yet, his tongue is still coated with a layer of dead white cells although it is improving. 

At present he is eating the equivalent of about one meal a day and drinking about 250ml.  Apart from obvious reasons he also needs to eat to ensure there is something in his stomach other than medicine, as the medicine alone will make him feel sick.  Already it feels that we are constantly asking him to swallow medicine, eat or drink.  He also needs creams applied 4 times a day, something that he hates.  

He is feeling quite low, tearful at times, and misses his home and friends very much.  He still manages to play on-line with friends for a bit each day but often has to quit because he is tired or has a headache.  The ECP causes his eyes to be sensitive to UV light, including the TV, and so he has to wear special UV glasses.  He is currently wearing some which are too big but has now chosen his own orange (!) ones which should be arriving in the next few days.

Unfortunately there is still a long way to go before there is any talk of Ryan returning home to the UK, something that he is very keen to do.  For the time being this is the best place for him.  

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