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, 24 May 2012

A bit about Ryan.....

Ryan is still well; after an enjoyable weekend Ryan has had a fairly good week so far.  On Monday his girl friend Ella was allowed to take the afternoon off school to see Ryan - the two of them had a great time making a den in her back garden and generally had great fun seeing each other.  While we were at Ella's house we had the good news that his MIBG scan was clear but also learnt that his neutrophils were very low (0.4 when the normal range is 1.5-5) This means that Ryan is classed as profoundly neutropenic and has almost no immune system.  His consultant therefore decided that he should start GCSF - this can be given as either a subcutaneous injection (into the skin) or IV (into his central line).  The IV infusion takes 1.5 hours in hospital whereas the injection can be given at home (by his nasty Dad).  We opted for the injection, much to Ryan's upset and so when we got home from Ella's he had to have numbing cream on his leg and then an hour later at 7.15pm Gareth had to give him an injection.  Despite having had 60 injections in Germany, he is only 5 years old and HATES injections. Unfortunately Ryan can remember that GCSF stings a lot when it is injected, the cream only helps with the pain of the needle. He cried as soon as the cream came off and continued to do so, asking why we were trying to ruin his lovely afternoon? He soon calmed down but insisted on being allowed a late night to recover from the trauma of the injection!

Then on Tuesday we had a sitting with a photography studio and had photo's taken of the three of us together.  The studio had offered the sitting via the hospital and we can't wait to see the photo's as we have so few of us all together!  It is a perfect time to have the photo's taken as Ryan is looking well and although he is loosing his hair it is not falling out as fast as we originally thought and so he had a trendy new haircut and is looking really cool.  We also had some new photo's taken with the Express and Echo, as the first photo they had was taken by us when we were at Sam's House in Bristol.  It was very funny when the photographer was here, Ryan had just come back from the photography studio and was under the impression that he was a professional model!  He kept suggesting new poses to the photographer, 'Now I'll get on my trampoline, Now on my scooter, on my bike, with my toys....' It was so funny and in the end he politely had to explain that he had to leave and go to his next job!  The day ended again with an injection - the injection has to be given at a similar time each day but we did manage to bring it forward an hour or so but had to agree to another late night!

Yesterday and today Ryan saw his tutor and she says he is doing really well. He is still a bit reluctant to learn reading and writing because obviously it is 'boring' but she is great at getting him involved and he works well with her - we are very lucky to have her.  He had a blood test this morning to see what effect the 3 days of GCSF had had on his blood counts and were a little disappointed to find out that his neutrophils were only 1.0 and his platelets were only 10! (normal range 150-600).  So platelets were ordered urgently.  Exeter hospital were told they would arrive between 3-4 and so we cancelled his mate Ben coming for tea and instead told a very unhappy Ryan that he had to go to hospital for platelets. He was not impressed.

At 4.15pm we got a call from the ward to tell us that there had been a problem washing the platelets and they had in fact only left Bristol at 3.45..... In brief we ended up going into hospital at 6pm (after yet another injection) and the platelets were connected at 7.45, way past Ryan's bedtime.  He was exhausted and completely over tired by the time we got him home and didnt get to sleep until 9pm :-( It is not looking likely that Ryan's counts will be strong enough for him to start the 3rd cycle of chemo on Monday but a decision will be made on the day.

Tomorrow we have a meeting with his consultants in Exeter and after this will know full details of the scan results and hopefully have an outline of a plan for the coming weeks.


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