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, 26 July 2012

It seems about time to do another update but there isnt too much to say or at least that is what I am thinking as I start to type...

Ryan did start his fourth cycle of chemotherapy on the 16th July, after a family trip to the dentist.  Like the last cycle on the first day Ryan had two chemotherapy drugs: vincristine and temozolomide and then Tues - Fri temozolomide on it's own.  This time we gave him more anti-sickness and woke him in the night to give him a dose so that he was still covered by the medicine when he woke up.  This definitely worked better and he was able to eat breakfast which he hadn't managed the last cycle, in fact he ate quite normally most of the week.  His friend Ella came into hospital with us on one of the days and chemotherapy certainly passed quicker in the company of a good friend.

At the end of the week he needed a platelets transfusion and on the sunday morning he had a blood transfusion and then we took him straight to a summer party that had been arranged for all the oncology children from our local hospital by the charity Richard's Wish.  The charity had been so thoughtful and had planned lots of craft tables for the children to make things, there was a punch and judy show and children's entertainer who also did a magic act. They had a tombolla and hoopla and made sure that every child got a present. They even arranged a photographer to do a family photo of each family that they then gave us as a gift.  On the way home in the car Ryan said it was his 'best day ever'!  He really has missed out on parties and so it really was a wonderful feeling seeing him running around having fun - where he gets his energy from after a week of chemotherapy I have no idea!

Then this week we managed to spend a day at the beach with friends and family, including our family from America, which was lovely and Ryan didnt sit down the whole time apart from to eat his packed lunch! This week he is having GCSF injections every other day to try and force his body to produce neutrophils and the injections seems to be doing their job as today his counts were good. But the hot weather, although we dont like to complain after all the rain, really is too hot for Ryan and he is having to stay out of the sun - somewhere in between would be really nice - please!

Over the next few weeks Ryan will have to have a series of tests and investigations: he has already had a dental check up and an echocardiogram to ensure his heart function is normal going into transplant, he will have an ultrasound of his abdomen, a CT scan of his chest, a full body MRI and an MIBG scan.  He will also have a hearing test, bone marrow aspirates and trephines taken, nasal aspirates, 24 hour urine collection and analysis of his poo for bacteria/viruses.  All these tests have been requested by Germany and are quite normal for anyone who is undergoing a bone marrow transplant.  The high doses of chemotherarpy used to prepare Ryan's body for the transplant can cause side effects to many of his major organs and so the doctors need to be sure that Ryan's body is fit enough to endure the treatment.  Ryan doesnt get upset with any of these tests, he doesnt even seem to mind having a 'special sleep and a back test' as he calls it.

On a lighter note we are also planning a birthday party for him with a small number of his friends to give him something to look forward to and to ensure that his birthday is celebrated in style.  It will be several weeks early so that any risk of infection close to the transplant are limited as much as possible but Ryan doesnt seem to mind this too much as long as he still gets present on his actual birthday too.  We travel to Germany the day after his 6th Birthday, which is the 2nd September.

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