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.

Monday, 10 December 2012

Christmas


Christmas, although it should be a magical time, always tends to add another anxiety to our lives.  Christmas is a time when families are together, a time to catch up with friends, to relax and enjoy some downtime.  Since Ryan was diagnosed in July 2008, for us Christmas just adds another pressure - to ensure that Ryan feels the magic of Christmas no matter where we are.  He deserves that so much.  

Christmas 2008 was spent in isolation in the bone marrow transplant unit of Bristol Children's Hospital, Ryan had grade 4 musucitus and was on morphine.  He woke in the morning to presents at the foot of his bed but at the end of the day most of them were still there. Christmas 2010 was spent in our local hospital again Ryan had mucusitus, this time after the first cycle of TVD.  Again Father Christmas found him and he opened all his presents but it wasn't the same as the previous year when he had been at home and ran downstairs, flung open the door to the lounge to find all his presents under the tree.  The look on his face that year was priceless.  

Christmas 2011 was spent in our apartment in Griefswald, we have fond memories of that Christmas and, despite being on a portable pump of anti-body ch14.18, Ryan felt 'ok' despite fevers and several other side effects of anti-body treatment.  The week before Christmas we had spent time with our friends Chloe and Nicola visiting the christmas fair, Ryan and Chloe had a great time.  We had a tree and opened presents; we visited our friends Family Bird, who were also having treatment out there.  We had the traditional christmas dinner, we had a good christmas but we weren't at home.

Since Ryan's own t-cells emerged we have been living day to day; Ryan can still reject the transplant at any time but he hasn't, yet.  At present he is receiving T-cell therapy (regular infusions of my T-cells) and is needing to be supported by blood products and GCSF and it has been this way for about 8 weeks.  This week we have allowed ourselves to think about Christmas and start to make some loose plans.  We have started to look for an apartment here in Tübingen but we have also asked the consultant here what is the possibility of Ryan returning to the UK, just for the Christmas period. He gave it some thought and said he had no objections, providing Ryan remains stable since receiving the higher infusion of my t-cells and we have agreed that we will wait and see what happens this week and then make a decision at the start of next week.

So that is where we are, we have a plan either way and will make sure Christmas is a happy one no matter where it is.

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