Hope does not like going to the "downstairs doctors." (Now that I type that, it sounds kinda ominous, doesn't it?) It's what we call going to the OR for a procedure.
"Downstairs doctors" carries a lot of meaning for her. It signals that there's no eating or drinking in the morning, that she has her port accessed and the needle is left in (instead of just a quick in and out for a blood draw), and that there will plenty of waiting - in clinic, in pre-op, and in the PACU (post-anesthesia care unit). It's the term that means she'll get hungrier and hungrier, but the answer will keep being "no." And that eventually mom will put on the funny blue gown and hat and walk back with her to the OR, where one of the zillion anesthesiologists we've met will hook up her tube to the propofol (aka "the white stuff") and she'll fall asleep. She'll wake up some time later with heart monitor stickers all over her chest, and an oxygen mask, pulse-ox ("red light") and blood pressure cuff on, creating a tangle of limbs and cords.
Monday was Hope's 21st time in the OR. She's had 21 lumbar punctures. 21. 21 of the 23 she will have during treatment. (Yup, just TWO left!)
When she started this nightmare, she was so little. We did everything we could to maintain calm, to seem comfortable with the blue gown and the needle in her chest, to joke with the OR staff and make it seem totally normal that we would bring her to that sterile place and let them drug her to sleep. And it worked, I guess. She has never panicked. She complains about being hungry, but has never cried when we are called back. In the beginning, I think she accepted it all because she trusted us. She believed our calm and resolve. Our friendly exchanges with the docs and nurses made it clear to her that they could be trusted to.
But recently I have the sense that there has been a shift - from a blind trust to a level of understanding that demands bravery. She knows what is going to happen. She can tell us that she doesn't like it - she told the anesthesiologist on the way into the OR, "I don't like downstairs doctors." He told her he didn't take it personally. But with a quiet resolve she accepted being wheeled into the room, having her tube cleaned and attached to the anesthesia and fluids, having a pulse-ox placed on her finger, getting a blanket and little foam pillow. And then right before she dropped off to sleep she did one final check in with me: "After, I have a glazed donut, mommy?" "Yes, Hope." "I happy, mommy."
This is a steroids week -- and guess what? Hope doesn't like that either. So twice a day we do a little dance:
H: I no like the medicine.
M:I know, I don't either.
H: I no like it.
M: I know, but who says you need to take it to be all better?
H: Gordon!
M: Right, Dr. Gordon. Why does he want you to take it?
H: All better.
M: Right.
H: I no like it.
M: I know, but I'll put it in the ice cream so you won't taste it.
H: I no like it.
M: How many times do we do this medicine? 10 times, right? And look how many we've already done - 8. So we only have 2 left.
H: OK, I try it.
She grimaces and takes a bite. And then says, "Yay, all done!" when the three spoonfuls are down.
Crazy brave. She knows. And she faces it.
Here's what we know she still has to face:
239 days left.
2 more lumbar punctures with chemo.
2 more vincristine infusions.
669 mL of 6mp left.
247 mL of methotrexate left.
21 more doses of prednisone left.
