August 11, Transplant Day
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Monday, August 11 – Transplant Day
Sunday night was another long one, with Jake and I switching off every few hours to care for Avry. The nurse was in our room until 3 AM again. (Side note—I would love to design transplant rooms for hospitals) By 7:30 we were up, starting the morning routine: weight, assessment, wiping down the room, changing linens, and giving her a bed bath.
The burns are so much worse now—covering about 75% of her little body. Think Clifford the Big Red Dog kind of red—so deep it’s almost purple. It’s awful. And after all those baths-did they even help? Apparently, some kids get these burns no matter what. There’s nothing that truly soothes them, because she has no ability to heal right now with her white blood cell count at zero. When she spikes a fever, the redness turns itchy, and we can’t let her scratch—one tear in her skin could lead to infection. And without her body’s ability to heal until counts come up, infection is terrifying. So, every 20–40 minutes, we’re sponging and lotioning around the clock. She’s swollen, uncomfortable, and utterly miserable. It’s exhausting for all of us.
Around 11 AM, they gave her pre-meds for the transplant. Outside our door was a hive of people—the team from Dallas that brought the stem cells, several of her oncology team, her dedicated transplant nurses, child life, and others. From 11:00–12:30, there was paperwork and prep. Just before 12:30, they began thawing the cells, carefully timing every step.
At 12:20, they brought her stem cells into the room. At 12:24, the transplant began. By 12:37, the last of the cells were through the tube—it was quick and painless. She spiked a fever within minutes before receiving the cells, but it didn’t alter the plan. Six people were in the room during transplant, and it truly could not have gone any smoother.
Afterwards, vitals were checked every 20 minutes for three hours. The transplant team came back twice more and was pleased with how things looked post-transplant. We’re still in the earliest phase, with two nurses assigned to her at all times here in the room.
She didn’t sleep at all today. We’ve had to increase her morphine dose twice in the last 24 hours. Please pray for a restful night—for her pain to be managed, the itching to ease, and the burns to calm so she can finally relax and begin true rest. It’s going to be a long three weeks until her counts come back.
Finally, around 7 PM, Jake and I scarfed down some food and had maybe five minutes to check in with each other. We are exhausted—though I’m not sure more sleep would even help. This kind of fatigue is deeper than the body; it’s in the soul.
I used to dread immunotherapy days because the hours after were so intense. But this—this is worse. She’s agitated, miserable, and there’s so little we can do to make it truly better.
Jake was quiet all day. Tonight, he finally said, “I hate cancer.”
We’re clinging to the reminder that this is healing. She’s sicker than she’s ever been post-chemo, but this is what gives our little girl back to us—even in the most painful way. The ache of missing the little girl we left behind in March is constant. But we believe this will bring her back to us. We trust this process to give her another chance.
Because when you see her like this, it doesn’t look or feel like healing—but it is.
Tonight, we’re asking for prayer:
• For our spirits to be strengthened.
• To face the fire with courage.
• To keep going in spite of the pain.
Praise for:
• A successful transplant!
• Life-giving cells so carefully preserved to give her a future.
• No side effects or reactions to the storage solution.
• Kind and compassionate nurses.
• Dr. Cohn being part of our team.
• Jake being here so I’m not alone.
• Avry’s resilience and fight.
• The blessings we know are still coming.
Avry hasn’t been tolerating her feeds. With mucositis, we desperately need her to stop vomiting so her nutrition can improve and the transplant can take properly. Tonight, we’re starting TPN—a type of IV feeding that delivers complete nutrition directly into her bloodstream via her Broviac. It’s not a long-term solution and isn’t ideal for transplant patients, so her organs will be closely monitored.
Please keep praying for her body, for her comfort, and for our weary hearts.
When I pause and look past the intensity of trying to soothe and comfort Avry—today was a good day. And for that, we are so deeply grateful.
When I pause and look past the intensity of trying to soothe and comfort Avry—today was a good day. And for that, we are so deeply grateful.
Thank you for your prayers, for every message you’ve sent, and for tagging us in your photos. We are truly honored to have you walking this journey alongside us.
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