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.

Saturday, 4 May 2013


It's been an eventful week again; I wrote the last update while Ryan was having ECP, he was having a lesson with this teacher and feeling fine. Within minutes of posting the update things changed suddenly.  Ryan eyes were wide and he started to wretch, he went as white as a ghost and he lips went blue.  We called for the nurse and she took his blood pressure which was dangerously low.  She called for help and 2 doctors and more nurses came rushing in.  His bed was tilted backwards so his head was lower than his heart and we managed to keep Ryan awake by talking to him while the doctors interrupted the ECP machine and made it start to return his blood quicker than it had planned to.  Apparently 'this sometimes happens' as too much of Ryan's blood was in the machine and not in his body causing his blood pressure to plummet.  As soon as the blood was returned he started to regain colour and his blood pressure started to improve.  Panic over.  

He was tired for the rest of the day and then during the evening and night his temperature started to rise and he woke several times with diarrhoea.  We spoke to the doctor in the Day Clinic the next day and he said that provided that Ryan was ok in himself we should just monitor the situation and 'see what happens'.  As the levels of steroid had been reduced earlier in the week it was not a complete surprise that Ryan would get a temperature and the upset tummy could be a flare up of GvHD.  It was the first time we had 3 hospital free days since January and so none of us were keen to go into hospital unless it was absolutely necessary, and as he was well in himself we just stayed at the parents house.  However on the Tuesday morning it was clear that Ryan was not right, he woke with a headache and felt sick and was quite sleepy.  When we got to clinic as planned for an infusion of anti-fungal medicine he fell asleep.  His blood pressure was fine, his blood results showed he had a raised infection marker but nothing more than that. We talked through the last few days with the doctor and he suggested that Ryan needed a higher level of hydrocortisone due to possible poor absorption due to the diarrhoea.  We gave him a higher dose and within an hour he was his usual self!  The temperature and diarrhoea have both settled again and tests on the stool have shown no pathological cause.

The next day, Wednesday, they suggested we had a check up to see what the infection marker was doing and it had halved.  However they then had the results of the previous Thursday's t-cell analysis which showed over 30% of t-cells originated from Ryan and so they urgently got the results of the test done the previous day which showed 12%.  It is therefore possible that the fever and diarrhoea over the weekend were a result of the two immune systems 'battling'.  No one will know for sure, but either way the increase in autologus t-cells is not a good thing.  However as Ryan was again feeling well the consultant was able to reduce the immune suppressant, Cellcept, by 25% to try and allow Ryan's new donor derived t-cells to become more active and overpower his original ones.  We have to wait until Monday before another analysis of the t-cells is done and hope to get the results soon after.

All in all the past week started badly but has ended with Ryan feeling ok again.  We have no hospital this weekend and hope that he will continue to feel ok although he still has very little energy so we won't be doing very much.  What we really need is to see the back of the autologus once and for all, but at the same time we don't want a flare up of GvHD - such a fine balance to get things right and such a long time to get there but it will be worth it.

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