6.20.08

So john let me know that apparently at his last doc visit it was decided that he no longer needs to go in for weekly or bi-weekly blood checks for leukemia. humm. ok. the good news is that apparently there's no longer a need to frequently screen for that since he's off the chemo. the bad news is, that specific chemo can cause leukemia for up to two years so the 2-4 per month checks were reassuring. i'm not trying to be glass half empty; just honest. john goes back in a month and we're not sure if they'll do a blood check at that time or not. i bet they will but who knows.

in the meantime, ...remember when john was having a start of vasculitis wave and then it just stopped, two weeks in a row, and i said, "it's either your body figuring it out or it's the meds working", then the doc took him off the meds and said 'good luck'. well, a wave of vasculitis started to appear three days ago. two days ago it was accompanied by pain in the ankles (which, in the past, once there's pain in the ankles he ends up in the hopsital within 48 hours). yesterday the pain in the ankles seems to have mostly gone away and the vasculitis spots seem to have stopped appearing. the ones he got threee days ago are, for the most part, staying the same size and not bleeding together. so, hopefully, his body is in fact figuring it out. praised be and phew.

so john went to the kids 'field day' event yesterday (all day out in the sun playing games and not stuck in the classroom) to volunteer and ended up playing about 4 hours of dodge ball with the kids. by dinner he still seemed ok. by bed time he was grumpy and over taxed and clearly had over done, ...but he had a blast. life does continue.

it's not so much this illness being fatal that i worry about anymore. now it's more learning to deal with chronic illness. it's a whole new place. i am attempting to not mother hen him to death. four hours of dodge ball were probably too much, but it was good for his spirits. and he needs to learn where his own boundaries are and how to read his body if he may need to be living with this long term. so, i shall keep my mouth shut and be thankful that he is still creating memories with the kids.
k