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, 15 May 2012

Ryan has tolerated his second cycle of temozolomide and irrinitecan well, so far….  He has felt sick most mornings and has been off his food but has been lucky so far not to have experienced diarrhoea.  There is still time for this to happen but at least at the moment he is doing ok.  His counts are dropping again but on Friday he did not quite qualify for a platelet transfusion.  He finished his chemotherapy on Saturday and we had arranged for him to have his last infusion about an hour earlier than the rest of the week so that we could all attend the Zumba event and luckily it all went to plan and we got there on time.  Ryan managed to find the energy to join in to a couple songs and said he really enjoyed himself.  The event was a big success; almost 100 people came along and in total just over £1000 was raised thanks to the generosity of everyone that attended. 

This weekend was a good weekend for fundraising as the Pig Race was also a great success and £2204 was raised.  It was also a beautiful sunny day for Charlotte and Busters Skydive which I think they both thorough enjoyed.  I will update the events page with some photo’s from these events by the end of the week.

On Sunday we decided to take a chance that Ryan would stay well despite having just finished chemotherapy and having low platelets and drove to London to visit Adam and family, our friends that we met in Germany when both boys were having immunotherapy.  We haven’t been able to see each other since February and since then sadly both boys have had progression.  Adam is an amazing boy, you wouldn’t know that he had literally just returned from a multitude of invasive blood tests in America in preparation for the treatment that his family are considering for him.  Adam has exhausted treatment options available to him in the UK and so will need to travel abroad for treatment, and so meeting this weekend was very important to all of us.  You can follow Adam’s story on his dad’s website http://adamsappeal.blogspot.co.uk/

The boys had a great time running around the house battling as the 'red ninja storm power ranger' and spiderman and playing on the wii and x-box!  They were pretty much inseparable the whole time we were there.  

Then on Monday a reluctant Ryan left London and we drove to Sam’s House in Bristol where we are staying until Wednesday for re-staging scans.  We took Ryan in the Bristol Children’s Hospital for a blood test this morning and we were not surprised to discover that his platelets are only 8!! and his HB is 7.9.  So they have ordering platelets urgently for today but as they take 4 hours to prepare they are unlikely to be ready until 4.30 at the earliest.  So we went back to the hospital at 1pm for a cannula to be inserted and for the radioisotope dye to be injected in preparation for the MIBG scan tomorrow.  And then we go back to the hospital again at 4.30 to wait for the platelets – walking up St Michaels Hill three times in one day is not something that you want to be doing and it doesn’t get any easier!!

We will return home on Wednesday after the scan but need to go via Exeter hospital so that Ryan can be cross matched for a blood transfusion which he can then have on Thursday after an MRI.  The week of re-staging scans is always a very difficult one, you try to put the results out of your mind, you try to behave normally but you also cant help but think about the enormous implications of what the scans show.  We are waiting to find out if the tumour has responded to the radiotherapy, whether it has shrunk; whether it is alive or dead, whether there is any disease anywhere else, whether Ryan will need surgery? We are hoping to find out some initial information on Friday but it going to be some time before a new plan is known.

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