Before I launch into things, I have to make a few statements.
Firstly, I have actively avoided learning much about the treatments, about the disease, about the possible ways that things WON'T work out. I figure that my job is to stay ultimately positive and supportive and awesome....whatever the heck that means in the middle of this. I am the rock upon which other people lean, to find support in the middle of their weakness. That's my self-imposed goal.
I figure that the basic desire in learning as much as I can about something like this is to gain some sort of control over it.
I have no control over any of it.
Now that we've gotten past that, I have to give a massive shout out to Kate. She's in a similar boat in that they've gotten a recent diagnosis which has turned their entire world upside down. But within that reality, she's thrown herself 100% into learning about Spina Bifida, and challenging herself to rework their world so it's copacetic with wheelchairs, braces, physical therapy and alternative outcomes.
The normal for me is to know absurd amounts of things about things. When I hear that Aronofsky is making an new movie, I research the basics of the plot, the stars, the producers...and find out all about the stars in the movie who I haven't seen before, et al. I like to know things.
But apparently not about chemotherapy and medulloblastoma.
So tonight I had to start learning. Here's what I learned:
- The blood is composed of platelets, white blood cells, red blood cells and plasma. There's more, but I don't care.
- The platelets help control bleeding.
- The white blood cells help fight off infections.
- The red blood cells help carry the oxygen to other parts of the body.
- Chemotherapy pretty much destroys the blood.
- The harvesting of the stem cells is really harvesting parts of the white blood cells.
- Chemotherapy specifically attacks the white blood cells.
- A normal person has a White Blood Cell (WBC) count of 6000 or more.
- A person on Chemo who is doing badly has a WBC of 500 or less. That's when they start to get really worried.
Amelie has a WBC of 100 right now.
yes, folks, she has no immune system. None.
So what does that mean?
She's going to get sick, really sick...really soon. The body encounters so many bacteria and virus each day...and the white blood cells fight them off. But if there's no white blood cells, there's no fight. It's pretty much like New Orleans when Katrina hit. There's going to be a buttload of looting, and Amelie is Best Buy.
Some of you are saying, "Oh, they can just keep her at home". That's a great idea...as long as we're not there. And she's not there. And Anya too. We are all drenched in bacteria, and there's no keeping it away from her.
Shelley had a checkup and a blood draw today for Amie, which is where we became privy to all this wonderful information. Her 1 hour checkup became a nearly 7 hour journey where Amelie was transfused with new blood and platelets.
So, today? We're glad we're not adherents to the Jehovah's Witnesses, nor of 7th Day Adventists, as we'd have blown that out of the water. Not sure what other faiths are against blood mixing at the moment, but we're officially opting out of those as well. Someone keep me abreast of the faiths I'll never ascribe to, thanks.
Amie went through all that today, and then came home...got her shot to help her white blood cell count, got pissed at us for the shot for 20-30 seconds, and then hugged us and asked to go to bed.
Oh yeah, she ate two monster bowls of cheerios before that too.
Today was such a crap day, for so many reasons.
Can we just act like it didn't happen?