Day +33 and still an outpatient

Adam had his first outpatient visit today, which went quite well. His blood cells are all doing the right thing and he didn't need any blood products today and probably wont until next week. Our Sydney consultant lowered his steriod dose a little on Monday and accordingly he has a bit more skin redness associated with the graft vs host (gvh) today. As this is what we want to happen, it is ok. As mentioned previously, it is all a bit of a balancing act, managing the gvh to try and ensure any last leukamia cells are eliminated, but not getting too much which could be damaging to his body. The good thing so far, with the gvh, is that it doesn't really bother him at all, which is nice for a change.

Adam is needing to continue to maintain a good fluid intake to look after his kidney's, which suffer a bit with the cyclosporin (immune suppression medication). He is doing really well with this, getting in about 1.7 L per day. Pretty good when you are not running around and generating a thirst. Finding new things to drink when you don't have a sweet tooth is a bit of a challenge though!

We had a nice 'free day' yesterday, all managing a sleep in, even Alex. Adam, Darren and Alex hung out at 'home' having a pj day. Matthew and mum went for a walk north along the sea/cliff face walkway, from Coogee to Bronte, had some sustenance and walked back. Our only mistake was not putting on any sunscreen, very naughty, we were mostly covered with clothes and hats, but our necks and faces suffered. The overcast day and threat of rain gave mum a false sense of security....... wont do that again in a hurry.
This afternoon we checked out the beach again, taking it in turns (someone staying with Adam) to brave the waves and investigated the natural baths on the north side of Coogee Beach, lots of fun but cold!
Thanks for your continued thoughts and prayers they are very felt and appreciated.

Lots of love us