Day 4 post transplant
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Friday, October 3
Day 4 post-transplant
This morning, Avry’s temperature was 104 degrees again on Tylenol. Her breathing was shallow, and she was moaning and crying in her sleep.
We actually slept—only up about 4 times. The hourly diarrhea and vomiting have subsided a little.
Max is our nurse today, and what a welcome sight! All the nurses are wonderful, but some are just really extra special—because they’ve been here on the really hard days.
Jake left for work again this morning after getting some more laundry done. A huge thank you to everyone who has gone shopping for specific pajamas to fit all her tubies and sent them—we can easily go through 8 pairs in a day! And she refuses to wear those hideous hospital gowns, insisting she’s “not beautiful” in them. Around 3E, the sedation suite, and the PICU, she’s known as the “pajama queen.”
Doctors’ Update
The transplant doctors and the infectious disease team were in this morning. Avry admitted she hurts everywhere—something she rarely does because she knows pain means more exams, medicine, and maybe even a CT scan.
Right now, it feels like we’re still “throwing spaghetti on the wall to see if it sticks.” Dr. Mian doubts it’s an infection and believes it’s rather a combination of mucositis and her body fighting so hard—yet we cannot know for sure.
Today she’ll be getting electrolytes, platelets, and a different broad-spectrum antibiotic, followed by more Lasix. And an act of her nasal cavity down to her abdomen. They’re also holding the lipids (thank God—they make her so nauseous and are nearly impossible to clean out of clothes).
The CT came back, clear!
The CT came back, clear!
Kidney Concerns
Avry’s kidneys are already taking a hit. 😰Her enzymes are concerning. This is when we NEED her to not have fever.
She’s on fluids but, due to post high-dose chemo and high inflammation, it is causing “leaky blood vessels.” This means some of the fluids are outside of her vascular system, which is why she’s so puffy.
To give her the medicine that her kidneys need (to aid in protection against kidney failure), she needs the perfect amount of fluids to pass through those kidneys. While she has fever, we cannot correctly monitor the needed amount of fluid. It puts her even more so at risk. (In Dr. Mian’s words—“that’s the scary stuff.”)
Steroids + “Hail Mary” Moment
We’re starting on steroids—which is a complete gamble. Steroids will bring her heart rate down and will kick the fever. But steroids will also mask any infection—which is not a good thing.
Dr. Mian and the team are carefully, cautiously weighing the odds.
“She doesn’t look septic and cultures are coming back clear—we’re still waiting on two more blood tests that will be back on Sunday to see if her DNA is immune to a medicine she’s on. But in the meantime—we don’t have time to wait until Sunday. So we are starting steroids tonight.”
In Dr. Mian’s words:
“This is one of those Hail Mary moments”—the kind where you do everything you can, and then trust the rest to God.
Tonight
Avry is lethargic and mostly sleeps in between the nausea, vomiting, and diarrhea.
I keep close tabs on her vitals and watch the machines with wide eyes.
The days are long and -the night longer.
The days are long and -the night longer.
Today We’re starting her on oxygen tonight.
She is the toughest little human I’ve ever met.
A Note From Me
I’m writing because I wanted you to have an update. There just isn’t much more to say.
I know I have a lot of messages to answer and to read. There’s not much I do except take care of Avry and snuggle her as much as she allows. Jake’s working so he can be with us during radiation.
I know some of you have reached out to me and suggested natural remedies for post-chemo that have worked with adults. This is a completely different situation—because this is a child, and what works for an adult with chemo does not apply in pediatric cancer, especially with high-dose chemo and transplant. I appreciate your thoughtfulness.
Avry is a very sick little girl. While she is considered stable—her post-chemo / post-transplant symptoms are not.
My Heart
I don’t wish this experience on anyone.
But I do wish everyone could know the refining it brings—
the way it strips life down to what truly matters.
3 weeks ago- Avry was running on the beach! It was the first in 7 months 💖
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Angela Angela
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The Pajama Queen! It fits your beautiful girl whose smiling face would be beautiful in anything! 😘
Joni Lutz