FIRST:
I am putting the finishing touches on the Second Annual Team Gab Virtual Race! Announcement tomorrow, but I'm so so sosososo excited for this year. Check back tomorrow for details on registration, giveaways, and how you can help make a difference in stories like Gabby's.
But if you're in a hurry, you can always CLICK HERE to make a donation today.
Continued from here, TTT #3....
Three Things Thursday
Baby's port was de-accessed yesterday. Good - she's not tied to an IV, and she
no longer resembles Iron Man. Bad - if we don't get released today, she's gotta
be re-accessed tomorrow, which involves needles, which always result in tears.
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After Gab's pneumonia was resolved, we were moved to a regular, shared room. Gabby was there for another 10 days, while we went through 2 or 3 roommates.
One of the roommates, Screechy, was ROUGH. I actually thought, at first, that she was also on the Dex, but turns out? Nope, just obnoxious. She really wanted pizza one night, and one of the nurses brought her some from her own lunch. Screechy threw it at her mom, and demanded fresh pizza. Her mom went and got her fresh pizza.
Huh.
The roommates that came and went were all admitted for a simple fever. With the port in their chests, any fever gets immediate admission for 48 hours, or until the fever is gone. They can't risk an infection in the port lines.
Gabby was pretty unpleasant the entire time, and got more and more withdrawn and horrible the longer we were there.
I felt so bad for her, I admittedly let her call all the shots. She wanted to watch movies non-stop, that's exactly what we did. Lame, I know, but I was paralyzed.
We brought her some real clothes, once, to try to get her to go play in the child life room, or go for a walk (she had ONLY walked to/from the bathroom pretty much this entire time), but this was the result.....
We ended up forcing the child life room on her a few times, but it was never very successful.
She started losing her hair before we left the hospital...
She was released on the 20th, and we were sent home with a shopping bag full of chemo and other medicines to give her, and a 2" binder of home care instructions.
Bringing all of this home, with so many different types of meds, was TERRIFYING. As grateful as I was to be bringing her home, it was completely overwhelming.
Luckily, The H was a medicine genius, and managed to keep everything under control, administered at the right times, and smoothly running.
We had been, pre-leukemia, a pretty comfortable 2-income family. Gabby went to pre-school near my office, The H worked, the older 2 went to school 3 blocks away, so it was safe for them to walk home.
Upon Gab's diagnosis, she had to be withdrawn from school. The H quit his job and became a stay-at-home dad. It cut our income by a third, and things were... tight, to say the least.
On Saturday, we couldn't take any more of the hair shedding - it was EVERYWHERE, and Gab was losing her mind that there was constantly hair in her food.
And there was a LOT of food. The oncologist's prediction that Gabby would be a non-stop eating machine came true - Gabby would wake up at all hours of the night, and demand to be fed. She was famished, all day.
Thanks to Facebook timestamps, I know that this picture was posted at 5:18am. She would routinely eat at least 3 or 4 breakfasts, every day.
It was SHOCKING, honestly, the amount of food she took in.
At one point, we brought her back to the cancer clinic, because her stomach was upset.
Um. It was upset because SHE COULD NOT DIGEST ALL OF THE FOOD SHE WAS EATING FAST ENOUGH. She just couldn't keep up with her hunger. That was the craziest thing I've ever seen.
A month after diagnosis (and she's clearly off of the steroids by the time this picture was taken, because she's smiling for the first time in weeks)....
Thank you for posting all of this journey. You have one tough daughter.:)
ReplyDeleteSo glad you are where you are today, and this stuff is behind you. Last intrathecal. But keep sharing your stories!
ReplyDeletethank you for sharing this. my sister has a child life specialist degree (but never used it other than interning) and i remember how hard it was on her. i can't imagine what it would be like to be one of the families. and crazy to see how quickly things change when a family is "hit" by the C word.
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