August 8 – Day 5 High-Dose Chemo / Day Minus 3 Pre-Transplant
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August 8 – Day 5 High-Dose Chemo / Day Minus 3 Pre-Transplant
This morning at 10 a.m., we wrapped up our baths—18 baths and 18 loads of laundry in just over four days!
Today Avry was exhausted. She woke up with a swollen face, and her mouth is so sore. She got her final dose of pre-transplant chemo this morning (not the kind that requires hourly baths).
It’s been a quiet day. So far, we haven’t seen any burns, though they’re expected to start showing up soon. Please, please join us in praying for a miracle—that there are none at all. She won’t have the ability to begin healing for another 21 days, so you can imagine how severe burns would be in the meantime. We’re starting to see what might be a rash… time will tell if it turns into a burn.
The morphine drip is going now to keep her comfortable. They keep warning us it’s going to get much worse before it start to get better. She’s slept most of the day, and I’ve held her for a good part of it. She’s so sick right now that she doesn’t mind isolation—she just lies here so still.
This morning, after her last bath, we all piled into her bed, and that made her smile. I joked with Dr. Cohn, “What will we do all day without baths?!” It’s funny—this week has both flown by and dragged on. How is this only a week?
Tonight, Jason, the NP, came by. He shared more of his daughter’s cancer fight and how transplant brought back so many memories from when his little girl went through it. He showed us pictures from her transplant days and now—at 21 years old. He was so gentle and encouraging.
The nurses have outdone themselves this week. This process has been stressful for them, too, but they’ve shown up with such kindness and care. It’s been wonderful to have some of the nurses from our early days here—ones Avry knows and trusts. Many of them are charge nurses, so we don’t get to have them often, but having them part of the transplant team has been great!
This weekend should be a restful one, focused on keeping her comfortable and preparing for Monday—TRANSPLANT DAY.
To give a little context on the timeline—this week’s chemo has been preconditioning for transplant. The goal is to completely wipe out every single cell in her body—good and bad—in hopes of killing off any lingering cancer cells.
The stem cell (bone marrow) transplant is a medical procedure where diseased or damaged bone marrow is replaced with healthy stem cells (her own stem cells). These stem cells restore the body’s ability to produce healthy blood cells, helping eradicate any remaining disease.
As her immune system is completely wiped out, it normally takes about 16 days for white blood cell counts to recover after standard chemo. But with high-dose chemo, recovery can take 21–30 days. Transplant Day is considered Day 0, and the critical stretch is the 21–30 days afterward—keeping infection away, protecting her organs, and keeping her comfortable until her body can start rebuilding.
The hard part? In the past, we’ve seen her bounce back a little more after each round. But now, we take her all the way back down to zero—again. Why? Because neuroblastoma is one of the most aggressive cancers out there. With rapidly dividing cells, in just days, a single cancer cell can multiply into millions—and if those cells are cancerous, they are deadly.
This is why it takes an all-out attack: five rounds of induction chemo (which we just completed), then two stem cell transplants, radiation, and another five rounds of chemo plus immunotherapy. Months and months of wiping out cells again and again—just to get to the root of the cancer.
It’s one of the harshest cancer therapies there is. But Avry is resilient. She is a warrior. And even though the looks we sometimes get from the transplant team say it all, we are holding fast to hope and trusting we will come through.
Trace seems to be doing so well. Every time we talk to him, he’s happy and at peace. It’s never easy being apart, but it brings such comfort knowing he’s well cared for and truly enjoying himself. So grateful.
As we close out this intense week, my heart is so grateful. Grateful that we’ve made it through these first difficult days. Grateful for a weekend ahead where our only focus is keeping Avry as comfortable as possible and soaking in quiet moments together. Grateful to not be doing this alone! And deeply grateful for each of you—your love, your messages, your constant prayers. We feel them. We carry them. They’re helping us stand. Thank you for walking this road with us. 💛 🎗️
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