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, 4 December 2012

I haven't felt much like writing an update lately as there is a lot of sadness here at the moment and I can't write about how we are without mentioning it.  I feel like I am constantly distracted with thoughts of the other children that we have become so close to in the 3 months that we have lived here.

Our little friend Jamie's condition has deteriorated and he is now critically ill in intensive care.   The encephalitis (inflammation in the brain believed to be caused by the virus) has effected the part of the brain that controls breathing and temperature.  There is such a fine balance getting the numerous medications right and trying to balance the benefits against it's toxic side effects.  He is currently heavily sedated and getting help with breathing. He is in our thoughts constantly and we are hoping and praying for a full recovery.

Yesterday we also said goodbye to a Bosnian family who have been living here at the house for over 2 years.  The mum doesn't speak English and speaks very little German and so speaking was always quite challenging for us both but she was always smiling.  We were shocked to find out a couple weeks ago that there was nothing more that could be done for her 11 year old son Faris. They  were living at the parents house here in Tübingen as the nearest hospital to their home in Bosnia was 100 miles away.  Faris passed away peacefully at the house on Friday with his Mum and Dad.  Saying goodbye to them yesterday as they left without their beloved son was truly heartbreaking.

And yet another family we have become friends with at the house, Kirsten and Tobias, have had devastating news this past week and we are hoping that they soon get a plan for treatment.

And then there is my wonderful son Ryan.  He is my little ray of sunshine through all this emotional upset and totally oblivious to all that is going on around him.  Gareth's mum, aka Nana Bob, arrived on Friday and we have had a lovely few days with her, finding snow, spending time at the apartment she rented and showing her beautiful Tübingen.  Ryan has had a great week really after the highlight of seeing Travis Pastrana but it was back to reality yesterday with a visit to day clinic.  His blood count was as expected (or should I say there were no surprises which is what we hope for) 

Last week we had a brief conversation with Prof Lang, the consultant in charge of Ryan, and he said that he had expected to see something happen, one way of the other by now.  He described Ryan's own T-cells as a ticking time bomb and said he was considering doubling the next infusion of my T-cells to 100,000.  Infusing T-Cells always comes with a risk of Graft Versus Host Disease (GVHD) where the donor cells attack Ryan's body.  To date there has been no evidence of GVHD and so he felt it safe to consider a higher amount of t-cells.  Before this is done though further tests will be done to ensure that the chimerism still shows that Ryan's blood originates from the grafted stem cells and that only the T-cells are Ryan's. In himself, as you have seen from the photo's, Ryan is feeling good.  He has come back to earth after meeting his hero Travis and it's back to reality with clinic appointments, and a possible platelet transfusion tomorrow.  

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