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.
Wednesday, 6 February 2013
Graft Versus Host Disease
Skin: overall his skin is improving, the only remaining signs are on his feet, hands and groin. The itching is all but gone - so one piece of positive news.
Mouth: Ryan mouth started to detiorate last Tuesday and has progressively got worse, the roof of his mouth is raw and his tongue is completely white so are his gums in places - Ryan says his mouth is very very dry and you can see his gums stick to his teeth when he talks. Now a diagnosis is confirmed and viral and bacterial infections have been ruled out Ryan has been started on a steroid mouthwash which should gradually allow his mouth to repair.
Liver: the liver enzymes are slowly reducing and, although they are still high, the doctors say they are happy with this improvement which they attribute to steroids.
Gut: the biggest problem for Ryan, causing watery diarrhoea often 2-4 times an hour, the longest interval being about an hour, but only occasionally. There is occasionally blood and lately mucus and gut lining being passed too which is very upsetting to see. He has also had persistent nausea and vomiting although this has improved in the last 24 hours as we are tweaking the numerous anti-sickness medicines. He has lost approx 2 kilos in weight. He is totally exhausted.
Today he has been started on an antibody called inflixamab, which will target the gut GVHD. The steroids and immune suppressant medication that has helped the liver may also start to impact on the gut as the therapeutic doses are reached. Tomorrow he will also start a treatment called ECP which I believe is a form of light therapy which has shown good results in treating both liver and gut GVHD. they are also considering Mesenchymal Stem Cell therapy (MSC) which is way above may head and I can't begin to explain how that works but again they have seen good results with this treatment. This involves stem cells being extracted directly from the bone marrow and used as a targeted therapy. They will select either Gareth or myself as the donor for this procedure. Gareth has volunteered but we will go with however is the best candidate.
The purpose of these three therapies is to, hopefully, speed up the recovery process (which even then is likely to be months rather than weeks) and reduce the amount of time that steroids are used. The biggest problem with using steroids is that they suppress the whole immune system and so increase the risk of infection.
Infection is the biggest threat to Ryan. We have been told that now is the time to be paranoid about being around other people who might have coughs, colds etc. Then today we learn that swine flu is confirmed on one of the wards, effecting oncology children and the nursing team! But already the whole hospital is now being told that face masks are mandatory, we should not eat in the communal ward kitchen but bring the food back to the outer part of Ryan's room and eat there. We are really happy to follow these rules and hope that all other visitors to the hospital do too.
Vanessa Riddle, who also had a transplant a few weeks before Ryan, had arrived to start her 4th cycle of antibody therapy but when the family have very wisely decided to delay treatment until the swine flu is gone from the ward - hopefully when Vanessa returns Ryan will be feeling a little better.