We had our meeting with the transplant doctor today, and as I assumed/suspected/feared, we're now way behind schedule. If we're lucky and his numbers go up, like, tomorrow, we may get to move forward with it next Tuesday. Regardless of how things go now, he'll start cycle 3 at least a week behind schedule. At least. Likely more.
The thing that has me angry right now is that according to what the doctor told us, what happened during this cycle should never have happened. Logan started to recover last week, if you remember, when he went up to a WBC of .2. Then suddenly, it dropped back down, he started having issues with his breathing and heartrate, and the fluid started building up in places it shouldn't be. And ever since then, we've been at a virtual standstill, he's been burning through platelets like mad, and he can't seem to stop having fevers. When I told the transplant doc about the start to recovery followed by the c-diff diagnosis followed by a rapid decline, he immediately said 'oh, it's the c-diff then. He should be pre-medicated with Flagyl before the next cycle since ithis kind of response doesn't necessarily have to happen every single cycle'. And then I started thinking, I wonder when he was first tested for c-diff? And it occurred to me that if I remembered correctly, it had taken them DAYS to look for it, even though he'd been having diarrhea. And of course, Adam and I are still relatively new to all of this medical schtick, so we didn't KNOW to ask them to test for it. Granted I have no proof of this, but I'm furious anyway. Furious. It's not as if it's just a little delay and it makes no difference. AT/RT kids can DIE over weeklong delays. It's an aggressive tumor and it's difficult to treat; that's why you need to stay on top of it and pray for no delays.
I can't even begin to describe my feelings right now. Well, I guess I could begin, but what would be the point? I'm angry, I'm sad, I'm frustrated, I'm scared, and I'm wondering where the heck God is in all of this.
Where IS He? Where? Because I'm looking really, really hard, and not seeing anything. I'm just seeing disappointment after disappointment. Where is the hope?