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, 14 April 2012

Another long day...


Friday 13th is not a good day to be having a procedure in hospital.  Our day started at 8am when we were asked to arrive at the Children’s Hospital; Ryan needed to be nil by mouth as he was having a general anaesthetic and he was first on the list.  What we hadn’t realised was that he was first on the second list of the day and so at 12.30, a very hungry very bored Ryan got called to theatre.  Luckily he was so hungry that he was actually quite happy to be taken to theatre and kept talking about what he was going to eat when he woke up!

He was as good as gold being put to sleep and chatted happily to the doctors in theatre.  As he was having stem cells collected there was also a team of nurses from the blood bank service and must have been about 10 gowned people in the room but even this didn’t phase him. 

About an hour later we were allowed to see him in recovery, unfortunately and for some unexplained reason, Ryan came around with a cannula in his hand.  There is no need for him to have one as he has a central line in his chest for intravenous drugs but it was there none the less.  This obviously distressed him as we hadn’t prepared him for it.  He also had the sticky pads from the heart rate monitor still stuck to his back, which had metal buttons on and were very uncomfortable.  His throat was so sore and dry from the pipe inserted into his airway that he could hardly speak – this is also very unusual.  So he did not wake up his usual happy self, he was sore and distressed and it didn’t help that we had to wait at least 10 minutes in recovery until a porter was found to wheel his trolley back to the ward.

Once he was back in the ward he slowly came round, the cannula was removed and he had something to drink and eat and gradually started to feel better.  His back, although stiff, was not painful as he had been given plenty of local pain relief.  Unfortunately though a blood count showed that he needed both a blood and platelet transfusion.  As Ryan needs washed blood products they took several hours to prepare and so it wasn’t until 6 o’clock that Ryan was connected to the platelets, immediately followed by the blood.  And so it was after 10pm that we left hospital and took Ryan back to Sam’s house for the night.  Needless to say he is very stiff and sore but was really happy to come home this morning.  We hope to find out early next week if sufficient stem cells were collected.  On a positive note we were really pleased to be learn that Bristol had agreed to send Ryan’s bone marrow aspirates to Vienna for analysis; the trephines will be processed in Bristol – the results of both tests will take about 2 weeks…

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