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, 19 March 2013

Ryan has managed to sleep at the parents house since being discharged to the day clinic last Wednesday.  It has meant a trip into clinic each day, the first morning after being discharged we had to be in at 9 and were still there at 1, other days have been shorter visits although nearly always an hour or two.  

Ryan blood counts seem to have stabilised again, and the need for GCSF (to stimulate the white blood cells) is reducing.  His platelets and HB, both of which are effected by ECP, have also stabilised but its possible that he will need transfusions of both next week when he has ECP again.

We had good news on Friday, based on the previous monday's blood test, that the level's of adenovirus in the blood plasma had reduced to 'less than 1,000' and the HHV-6 virus is now only in the leukocytes and not in the blood plasma.  Both of this is great news and shows that Ryan's bone marrow is slowly recovering and fighting against the viruses, together with the anti-viral medications.

Ryan is managing to eat sufficient to maintain his weight, his appetite still isn't really there yet but he understands that he has to eat if he wants to stay out of hospital.  His tummy is still effected by GvHD and so we have to be careful what foods he eats but he has found some things that both he and his tummy like.  

As the levels of the immunosuppressent in his blood reduce the GvHD of the skin has become more noticeable again.  His skin looks 'irritated' more than anything.  Sometimes a rash is clearly visible, then other times it is gone again.  His blood pressure caused problems again this weekend, causing him to wake up with a headache and nausea and as soon as we got to clinic he was sick and then fell asleep.  Apart from this he has mostly felt ok since leaving hospital, he is still exhausted and very ready for bed at 7.30pm,  in fact if it wasn't for the schedule of medicine that runs from 7am until 7.30pm he would be asleep much earlier i'm sure.

Here is a photo of the tablets he is taking each day - in addition to this there are 8 syringes of medicine and a steroid mouthwash…..

We had expected an overnight stay in hospital yesterday (for the drug meant to contain the adenovirus) but when we arrived at the ward at 9am laden with suitcase containing the x-box and clothes and bags of food and medicines we were told that an emergency admission during the night meant that Ryan's room had to be allocated (although not sure why no one rung us) and so we are now expecting to be admitted tomorrow……

1 comment:

  1. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?