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……