bad days

It's been hard, watching the progression of Brian's disease. Not that things are changing rapidly, but the last few weeks we've noticed a trend. What used to be his bad days are now his good days. Does that make sense? On a bad day, he'd be tired and winded, feel nauseated and look pale. But recently that's been the norm. On a bad day he's been feeling worse. Sometimes MUCH worse.

Just over two weeks ago his numbers started a decline. I thought nothing of it this time. Every other time I'd panicked, thinking he'd have to have a "blitz" of treatments (three treatments in one week, usually). But every time the numbers came up again on their own. I guess you can say I got overconfident that it would work itself out. Surprise, surprise - his platelet count dropped down to 78. And I didn't even notice. I've been less and less diligent with checking his lab numbers, so it took us by surprise. To remind you, his platelet count was in the 60's when he was rushed to VGH the first time. So it was pretty close for a second time. 6 treatments later (make that 7, counting today's regular treatment) and the numbers still aren't where they should be.

I'm frustrated. I feel so helpless, so STUCK. I want to get off this roller coaster, or I want to be useful somehow, and help Brian get better. But there's nothing I can do, except try to support him. It's not enough.