You know, even as a kid I hated cliffhangers. It just seemed unfair to make me wait another week, or even day, to know what happened to She-Ra and He-Man.
And so for those of you who follow this journey, I won’t do you like that.
We got the results back. Adahlia isn’t having a response to the steroids yet.
What I mean is that she isn’t making red blood cells yet. Zero reticulocyes. Undetectable. While they are certainly wrecking unseen havoc on her system, they aren’t doing what we want them to do.
This doesn’t mean they won’t work at all. Some kids require a month on high dose steroids before their bone marrow kicks in. Other kids require two. Still others have actually had zero response until SIX months of high dose steroids.
I’ve already warned N. that there’s no way in Hades I will allow my child remain on high dose steroids for six months. I won’t do her like that.
But every week that goes by means a week longer on high doses before we can even begin to think about weaning off them.
I’ll test her for them again tomorrow. (I’m not sure what I’ll do if they now test negative for her. We have to at least give it a month — I’ve committed to a month. And there’s error in everything…. in every form of testing… including fascia testing.)
…
We have swam against this current for so, so long.
We need a break. There are so many things I could wish for. I really only want one.
We almost tried steroids one other time… when she was 3 years old and docs told us that she had “emergent” levels of cardiac iron (i.e., it was an emergency because she had iron built up in her heart from so many transfusion). We agreed that if the situation didn’t resolve, we’d have to try the steroids. Each additional transfusion poured in more iron. Each bag of blood was another locked up, blown engine. Her plane couldn’t continue to fly this way.
The docs increased her chelation medicine. Even so, her heart wasn’t supposed to clear of iron. Nothing to lose, no previous research to follow, I decided to start doing a japanese moxabustion technique over her heart (CV17/BL12-15) to help guide the chelation to it. Six months later, her heart was clear.
“Unbelievable,” they said.
We took it as a sign we should keep going with what we were doing; not to do steroids yet.
As bad as its gotten, every time everything has almost collapsed entirely, something would swoop in and save us. Some last minute bell. A ball hit just high enough, just far enough, for us to slide into the next base.
Never the home run. But enough. Enough to keep breathing, to keep going. To put our chips back on the table.
“Black.”
…
I read a friend’s post about commitment. No one could doubt my commitment to her. I’ve fought for her like a lioness. I’ve sold and given and wagered everything I’ve ever worked or hoped for. All of it on a future that’s always been just out of reach.
If I could only find the key.
If I only had more patience.
If I could only put together the puzzle.
….
The game isn’t over. But I’m tired and I want to blow the whole thing up. Flip over the table. Toss each piece into the fire and watch the puzzle burn.
But I’ve been here before. And God knows I won’t stop playing. How many hits can I take? Hell if I know. But it seems like a lot, and I guess there must be some sort of value in knowing that limit.
Can’t think of why, right now, but that’s okay.
I sure hope these steroids work. The idea of poisoning her, making her struggling body work even harder, blowing out her adrenals and wrecking her digestion all for naught (and when we’ve all worked so hard and she’s been so good and brave to get this to this point) makes me go a wee bit insane.
I really, really can’t destroy my own daughter.
So this stupid medicine had better work.
…
Driving home with her. My Ipod was last updated sometime before 2010.
And my scrolling fingers stopped on Foo Fighters.
What if I say I’m not like the others?
What if I say I’m not just another one of your plays?
You’re the pretender
What if I say I will never surrender?!?