Wait, Wait, and Wait Some More: Day 11

Sorry for a long day of radio silence. But it’s been a long day of hospital time. Paquette was here at 9AM ready to go!! But her pic line wasn’t in. And somehow that has… taken… all… day. Putting in the pic line was not fun (why would anyone think it would be?) She said comparatively a bone marrow biopsy without putting her under was easier, so that’s a good bar for measuring hell IMHO.

The line goes up through her veins and across her chest in into her heart. Then you have to wait for x-ray to see if it went into the right place, and that took two hours. Then they decided it was a little too far in. So you have to wait for the pic team to come back. And then x-ray again. You see how the time dwindles away?

And then they can’t preorder the drugs because they only have a small shelf life. (Horse serum is very delicate it seems.)

Somewhere in all of that they did the severe allergic reaction test. If she’d had a problem they would have switched to bunny serum (aw bunnies) but it’s not as effective. She flew through that with no reaction.

And so, at 4:00 pm, here we are and they are just starting the pre-drugs to help stave off a reaction. This of course means, I’m sleeping on the couch, and poor Theo is making his own Hungry Man dinner again tonight. No, Aunt Gloria arrived today and spent a few hours at the hospital with us. Now she’s off to find Theo at soccer practice, and she’ll take care of him tonight and tomorrow. I’m not leaving while she’s getting the drug, so I guess I’m not leaving.

Theo’s teacher wrote today to say this: During a class discussion about EMPATHY, the kick starter for our ideas, Theo said, “Empathy is when someone doesn’t feel very well, we feel bad too, and then that helps a person get better.” What an angel.

The drugs are starting to make her drowsy which is good. Life is starting to make me drowsy which is also good.

Numbers you ask?

These are from this morning –
WBC 2.23
HgB 7.5 – first big drop on the red blood cells in a bit
Platelets 26k after the transfusion so not as big a relative jump as the last one but they were happy
And the all important ANC which is how we now look at how immune suppressed she is is down to 0.1 so there’s no place to go but 0.0. She has no immune system right now. (those paying really close attention will notice I wrote that number wrong last night)

Things to think about: Playing “Everybody Hurts” is just asking for it #carcry

It’s so hard to see Theo became this unmoored latchkey kid being passed from person to person. When we had him we wanted to have one of us at home to be with him through his childhood. That was Lisa. That’s what I was thinking John and Tina when I dropped him off at your house this morning and had to turn away to have a big ol’ cry. How different his life has become. Thanks for closing the door so Theo wouldn’t see. But I’m also seeing in so many ways big and small this community around us just holding him up. So many eyes have turned towards him and people I barely know are picking up where Lisa and I left off. I can’t thank everyone enough.

Here we go – they are starting the ATG right now. In three, two, one….



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