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, 16 October 2012

There really isnt so much to report at the moment - which is usually a good sign.  Ryan seems to be  gradually getting stronger and willing to do a bit more outside of the parents house.  I have realised that one of the reasons that he doesnt like to go out is that he doesnt like to wear his mask.  It has to be said that people stare.  I am sure they are wondering why he wears it and whether he is contagious!  It actually suits us that people move away when he is playing outside so we just smile at them.

Ryan continues to attend Day Clinic twice a week to be reviewed by a doctor, have his weight checked and routine blood tests.  This week the plan is to try and reduce the steroid that was prescribed to stop his high temperatures.  It was originally 20mg twice a day and this week we are down to 7.5mg twice a day so it's a case of monitoring his temperature to see what happens.  If his temperature goes above 38.0 we have to take him into hospital so that bloods can be taken and he can be seen by a doctor - as annoying as this is to us it is not safe to assume that a rise in temperature is purely down to the reduction in steroid as Ryan is obviously very susceptible to infection at the moment.  We discussed this with the doctor and he said that providing his blood tests did not show any infection and his infection/inflammation marker was not raised then we could simply increase the steroid and try to reduce it again the following week.

Since the last update we have taken Ryan to a dry toboggan run for half an hour - he had great fun zooming down the run screaming to his Dad to go faster and 'don't brake!' - good to see that he hasn't lost his davedevil streak!  He even had a go with me and said 'Mum you weren't as fast as Dad but you did great' - high praise for me then!


Then the following day, as the sun was shining (and the wifi was down at the parents house), we drove down towards Lake Constance, in Switzerland but as Ryan was suitably unimpressed with the enormous lake we didnt drive into Switzerland but luckily found a wildlife park with children's play areas and Gareth and I were both pleasantly surprised to see Ryan leap out of the buggy and head for the trampoline.  It was a lovely afternoon and we packed a lot into a couple hours.

















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