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.

Saturday, 3 November 2012

Still waiting...


Yesterday was a long day, we got to hospital at 9am and left at 4pm. 

The day started with an appointment in radiology to discuss the risks and side- effects of the Total Nodal Irradiation that will be given to Ryan's lymphatic system to kill his remaining T-cells.  The consultant in charge of Radiotherapy had to contact Bristol Children's Hospital to find out the exact dose of radiotherapy that Ryan's body has received before he was able to agree to giving him more treatment.  They had to determine exactly how much treatment each of his organ's has received in order to ensure that they did not exceed the recommended maximum dose.  Using this information they have confirmed that instead of giving Ryan the treatment in one dose, it will be split into 2 or 3 fractions which will reduce the biological dose of radiation his body receives, and will reduce the immediate risks.  Not the best start to a morning.  Then Ryan had to have CT scans and measurements so that they can ensure that the radiotherapy is only given exactly where intended.  He was really good for the scans right up until they drew 3 crosses on him and covered the crosses with a plaster - at which point he got really upset - plasters for some reason has always been something he absolutely hates on his skin.  They need to stay on until he has the treatment - and at present there is no set date...

Then we had a clinic appointment where we were anxious to learn Ryan's blood counts; it turns out that they had all dropped since wednesday, but only slightly.  This meant that he still has bone marrow function albeit a very poor one.  He was borderline for needing both a blood and platelet transfusion and so we are expecting to have both on Monday. At 3 o'clock we met with the consultant in charge and learnt that the T-Cell analysis was disappointing and showed that all of Ryan's T-Cells still originate from him, however the earliest that they could have had an impact was Wednesday and so all is not lost.  There were also certain markers in his blood count which the consultant found 'of interest' and showed him that the bone marrow was still functioning.  Because of this he informed us that he had decided that it was too soon to admit Ryan for re-conditioning and instead he was going to give Ryan 50,000 of my stem cells.  The first time Ryan had been given 25,000 and because these did not cause Ryan any adverse side effects, such as Graft Versus Host Disease (GVHD), the dose was doubled.  Whilst Ryan has some form of bone marrow function there is still a SLIM chance that the situation can be reversed and so the waiting continues.

Gareth and I were both quite surprised by this turn of events but very pleased.  The last thing we want is for Ryan to have more treatment unless it is absolutely essential. And so we both came away a little lost for words but happy to be in the position that we can continue waiting.

This weekend will be a quiet one due to his low counts and we have been given an injection of GCSF to administer to Ryan on Sunday in the hope that this will keep his white blood count and neutrophils where they are now - both are between 0.5 and 1.0. 

All the snow from last weekend has long gone but I thought you would like to see a photo of the snow we found at the castle last weekend and Ryan earlier this week at the park we found in Tübingen. (You can tell who always takes the photo's!)  I also wanted to thank you for the kind messages that we have received on our facebook page, by text and e-mail and to everyone that is praying for Ryan and sending him positive thoughts - we really do appreciate it and are sorry that we can't reply to everyone individually.



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