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.

Tuesday, 9 October 2012

Ryan has been discharged from hospital

Since my last update lots has happened but mostly good things; mainly Ryan being discharged just 19 days after having his transplant, which meant a hospital stay of 31 days.  Even as I write this I can't really believe that it is true, it is totally amazing, he is totally amazing.  He walked out of the hospital back to the car while I walked behind with the empty buggy!

I wont bore you with the details of our stay on Station 14 - the oncology ward.  It was stressful, with poor Ryan having to wear his mask all day, and was not how we envisaged his stay in hospital would end but we have to be thankful that Ryan only needed to be there a few day while he was weaned off morphine and the IV drugs were changed to oral ones.  At least we were fortunate enough to be able to take him back to the parents house in the evening before returning to hospital early the next morning.  Luckily the little boy that we shared the room with in the day was lovely and they understood our concerns and reasons for not wanting Ryan to share a room.  The two boys got on well despite the language barrier and both enjoyed watching Tom and Jerry DVD's.  On Sunday he was discharged to the parents house after a review with the doctor in charge of the ward.  The doctor said that Ryan has done amazingly well and was in very good shape, he just needed to start eating.

Ryan has been very happy back at the parents house, the first thing that we had to do was set up the x-box of course but he has happily prized himself away to play with Jamie who is a couple weeks ahead of Ryan and also now doing really well.  Both boys love Power Rangers so run around the ground floor of the house fighting invisible baddies - it really is great to see them having fun together.

Yesterday Ryan had to attend his first appointment at the Day Clinic where he is seen by more new doctors and nurses.  His blood results were all good and for those interested his counts are now: WBC 3.42, HB 10.8, Platelets 234 and CRP 0.6! All of which are fantastic.  We have to attend clinic twice a week and so now have 2 whole hospital free days which feels fantastic.

In himself Ryan is happy and feels well BUT is noticeably tired after short bursts of energy.  This is obviously to be expected but hard to convey.  He does run around, go on his scooter etc but then needs to rest which is something that Ryan finds very hard to do!  Over the next week or so, as he gets stronger we hope to take him out to see a little bit of the local area but at the moment it is more important that we focus on eating, drinking and medications.  He has to drink a minimum of 600ml each day, ideally 1 litre, as some of the anti-biotics, anti-fungal, anti-viral and anti-rejection drugs are toxic to the kidneys but he is managing this and is also eating 3, albeit small, meals a day.  Each day he has 9 medicines to take, most of them he has to take morning and evening!  I'm surprised he has any appetite with that lot sitting in his stomach.  All in all he is doing amazingly well and we can't be more proud of him than we are today.





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