Today was yet another milestone. One I'm kind of takingg in quietly because I'm stuck in my own head lately. In a year from today, Brinley will be OT (off treatment.) The idea of off treatment worries me, it gives me crazy anxiety, and I literally feel sick. I suppose I should be excited about not having to hit up the hospital every month, I should probably be at ease that treatment is over and we can resume what most would consider a normal life? However off treatment takes on a whole new role inside my brain. OT for me means no monthly check ups, and no blood counts to see how her body is responding or, isn't responding. Again, I enter the world of unknown, and "what if" it's a place I don't do well in.
I have to admit, I was doing really good up until today. Brin's appointment started off well, and when I was worried about her hemoglobin being down, I was surprised that it can actually went up! First time in 5 months since it's been over 9!(below 8 calls for a transfusion) What I wasn't prepared for was that her ANC dropped from 2400 to 516. Which means in 2 weeks time we'll have to head back to the hospital for another CBC, and fingers crossed it'll go back up. Hopefully before she catches something from herself..or someone else. These are the days I spend worried and beating myself up, especially if something goes wrong. "Why did I let her play outside?" "I shouldn't have taken her to the movies" "maybe she caught something from the restaurant we had dinner at." At the same time she might just float through and be just fine. But I've been in this situation before, and it ended with 10 days of isolation in the hospital. To add to the mess, Brinley has been battling a cold on and off for 5 months now, which has spurred her doctor into checking her immunoglobulin count (her IgG to be exact) to see if she even has the ability to fight this off once and for all.
So there is it, I'm totally running out of steam. I'm so sick of dealing, and coping. I realize I have no other choice in the matter, but I wish I did. As my husband always says..."If you don't like it, fix it. If you can't fix it, find a way to cope". I just feel like my coping abilities are wearing very thin...
