August 5-High Dose Chemo/pretransplant
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Tuesday — Day 2 of High-Dose Chemo (Day -6 Pre-Transplant)
I can’t even tell you how many times I’ve sat down to write… and then stopped. What do I even say?
Today is Day 2 of high-dose chemo—what they call Day -6 on the transplant calendar.
We’re getting through it.
Every six hours, we do the chemo decontamination baths. Jake and I take turns sitting on the shower chair, holding Avry. The one holding her also holds her port in place with a washcloth while two nurses, dressed head to toe in PPE, scrub her down. This specific chemo causes chemical burns if it stays on the skin. Not if—but when. Every washcloth gets one swipe before being tossed on the floor. They have to get into every crease and fold, because that’s where the skin breaks down first. Her skin is already fragile—and it will only get worse over the next three weeks.
These nurses have been specially trained or have prior transplant experience. While the two are in the shower with us, another nurse is sanitizing the room, and a fourth stands outside the door should there be any needs for more supplies. Everything Avry touches has to be sanitized. Jake and I also shower every six hours, change clothes, and launder everything. By 10 a.m. today, Jake had already run 10 loads through!
Yesterday was chaos.
The transplant coordinator went on a power trip—making up her own rules and spreading misinformation that left us completely unprepared. When we asked the lead transplant doctor about it, he didn’t even know what she was talking about. It didn’t take us long to realize this wasn’t about protocol. It was about control.
I was beyond frustrated. Jake stepped out and talked with department heads to straighten things out. Nothing was how they said it would be. The coordinator even put a visitor log outside Avry’s door and expected Jake and me to sign in to our own daughter’s room. Jake told her he’d sign it once, and she could fill out the rest herself.
This whole process is hard enough. Stage 4 cancer is brutal. Add in someone who makes it harder just because they can? It’s unbearable. We already feel like we’re at the mercy of everyone else. It felt like we were sold a 5-star experience and got here to find out they couldn’t deliver it. We told them we aren’t anti-rules—but we are pro-consistency. We know we’re the first transplant here, and we get the excitement, but please—remember we’re human. This is our daughter’s life. Don’t get so wrapped up in protocol that you forget the point of it all.
Everyone was speaking a different language yesterday, and right in the middle of it was our little girl who just wanted to go home.
I called Janie ast night. I needed someone who would be honest. She validated our concerns and told me to keep advocating.
The issues aren’t with the nurses. They’ve been amazing. The problem was with someone who sits behind a desk and thinks their title means they can steamroll families. It still burns me. It makes me question so much. We’re trying to trust the medical team—but when the systems are broken, it’s hard.
Let’s just say “Anne” was nowhere to be found today. 🤷🏼♀️
Honestly—it feels a little like jail. So many rules. So little privacy. There’s barely any dignity left. We get about two hours between each bath, and even then, there’s no real space. Now I understand why real transplant units are set up the way they are—and this one is not.
But we are where we’re supposed to be. I keep reminding myself. Even when everything inside me wants to run.
Jake asked if we should look into transferring. I told him, “This is day 1… let’s see how the week goes.” A month from now, we’ll probably have forgotten about these early days—and we’ll have a short break before we do it all over again.
I’m hopeful that next week, with Dr. Cohn leading transplant, things will feel very different. She’s a problem solver. She puts out fires fast. She’s boots-on-the-ground, isn’t afraid to get dirty, easygoing, and doesn’t treat us like we’re clueless. She’s definitely one of our favorites.
This morning, I told Jake: “Today’s going to be different.”
We’re going to be the problem solvers.
The peacemakers.
We’re going to create a different atmosphere from yesterday’s chaos.
Our motto: “Don’t be a bear. Don’t see a bear.”
And it was different. So much better. Everything flowed. Jake and I figured out a system. Everyone knew their role. No one was hovering outside the door with a clipboard.
But today… I can see it starting to take a toll on Avry.
She’s puffy. Sleepy. The sparkle isn’t there—her body’s lagging. Her appetite is fading. But she’s doing so well. She’s adapting so fast.
They had to remove her NG tube Monday morning because the chemo makes her skin too fragile for tape. That’s why it was so important for us to get her weight up. And we did! When we came in Sunday, she had gained 11 pounds since diagnosis! (She was slightly underweight at the time.) They expect her to lose 3–5 pounds during this phase, but she’s got margin now—and I’m so thankful.
Watching her stop eating is hard. But I keep telling myself—we prepared. And even though she’s heavier to carry now, it’s worth it. She’s not my tiny girl anymore.
She’s handling the baths—even the 4 a.m. ones—like a champ. She’s doing the mouth rinses and red-light therapy. The worst part is the oral meds. No tube means we have to hold her down to get the horrible stuff into her. That part just breaks me. 😭
But she’s still coloring, tracing, and using her dry-erase markers nonstop. It’s her favorite thing right now. Amy sent an envelope for her to open each day. Janessa made a scrapbook for her and Odessa to write letters back and forth. Today, Avry got a note with Odessa’s paw print. 🐾
The playroom finally opened today, and we got to spend some time there.
They’ve warned us: the real sickness is coming.
That the play is almost over.
And that’s the gut-punch. We got her Curie score to zero. We watched her slowly get stronger. And now… we take her all the way back down to zero. Again.
It’s so hard watching her fight and endure more.
Last week, I asked Dr. Paul—whose son had cancer—why innocent kids have to pay the price of this curse. He looked at me and said:
“I think being born into this world is an invitation to experience life and death.”
I just stared at him. I didn’t want a logical answer. I just wanted something to ease the ache. But those words have sat with me ever since.
I keep asking why.
Why didn’t God just wave His hand and stop it all?
Why not start eternity the day Eve sinned?
Why give us choice if it meant pain?
Yes—I know the answers. “To bring Him glory.” “To experience redemption.” But still… why though?
What’s the point of a life that feels like a constant fight against humanity and mortality?
So I’ve turned to Ecclesiastes. And there, somehow—I found peace.
In the end, nothing else matters but living with reverence for God—trusting Him even when life doesn’t make sense.
So… what’s the point?
To walk with God through the mystery.
To enjoy the little things.
To honor the sacredness of time.
To embrace your humanity without being consumed by it.
To surrender to the One who sees beyond what you can.
Even when life feels upside down—He is still the point.
And I reinforce this in my mind multiple times a day.
The past few days, several dear friends have been hit hard with ugly diagnoses.
Life is cruel and beautiful in the same breath. And I think part of this journey is learning to be okay with holding both at the same time.
Tonight, Avry sobbed, “I just want to go home and be a family. I miss Trace. When can we go home??”
And yet—earlier today, she sat up and played every single game we brought along! We did all the crafts too. I didn’t think she’d still feel well enough, but she surprised us.
And tonight, Jake got to talk to Trace—and he sounded so happy. And that is everything. Knowing he has a good routine, a kind family looking after him, and space to just be a boy… it makes the separation bearable. It’s not easy being apart. It’s gut-wrenching to feel helpless. But knowing Trace is safe and surrounded by love goes a long way. I’m so grateful.
There are so many rules right now—especially around what foods we’re allowed to eat and how they must be prepared. So, we opted for a weekly meal delivery—and so far, we’re loving the simplicity of it.
Tonight, Simone came in to do our sanitization. She’s a sweet mama whose husband battled cancer last year, and her presence was like a breath of fresh air. She was encouraging, gentle, inspiring—one of those people who carries grace into a room. It’s so easy to get tunnel vision here, to live hour to hour and feel isolated from the rest of the world. Like no one sees the excruciating, impossible parts. But then someone like Simone shows up—on purpose—with words that remind you: you’re seen. You’re not alone. God bless those nurse angels who notice and speak life.
Tomorrow…our little girl turns four.
It seems impossible. Four years ago, she was a tiny newborn. Cancer wasn’t even in our vocabulary. I couldn’t have imagined that on her fourth birthday we’d be living in a hospital—fighting for her life, separated as a family.
It feels like a lifetime ago that we introduced Trace to his baby sister for the first time. Jake held her first—so proud. I still think of that moment and tear up. These children… they’re loaned to us. And even though life hasn’t followed my plan, I still love thinking: Jake Schapansky, party of four. That phrase still gives me butterflies.
I always thought we’d have enough kids to make up our own baseball team. But instead, we have the 4 of us. And while it wasn’t what I planned, I love our little family with my whole heart. Avry Jo completed us. She always has.
She’s always been a firecracker—a whipper snapper—and that hasn’t changed. I can’t wait for the day she’s running out the front door again, little brown haired ponytailed girl, barefoot wearing her pink rubber boots in 90-degree weather.
That day is coming.
And we’re so ready.
Thank you for holding us close—through your prayers, your love, and your steady presence from afar. We feel it. We truly do.
We know this journey is long and hard, but we also know we’re not walking it alone. Your prayers are carrying us, covering Avry Jo, and filling the gaps where our strength runs thin.
Please join us in prayer for Avry Jo and our family during this critical stage of treatment:
🙏 For Avry Jo’s Body
• That every inch of her skin would be carefully cleaned and protected during the chemo baths—so burns will be minimal and her skin remains intact.
• That the side effects of this high-dose chemo would be mild, manageable, and short-lived.
• That her strength and stamina would hold up. That she would keep fighting with the fierce spirit we know and love.
🙏 For Jake and Me
• For wisdom and discernment in every decision and conversation.
• That we would meet each obstacle with grace, patience,and kindness, even in exhaustion.
• For physical strength, immune protection, and moments of peace in the middle of it all.
🙏 For Trace
• That he would feel deeply loved and cared for, even from a distance.
• That he would be at peace, feel settled, and enjoy his time with friends.
• That he would sense our love across the miles and not feel forgotten in the chaos.
🙏 For the Medical Team
• That our nurses and doctors would be patient, thorough, and attentive.
• That they would see Avry as a little girl—not just a task or checklist.
• That they would be united and communicate clearly with one another and with us.
🙏 For God’s Presence
• That Jesus would be felt and seen in room 386.
• That His peace would fill every corner of our room and every crack in our hearts.
• That we would continue to trust His plan, even in the unknown.
🙌 With Gratitude
• We give thanks for the healing that has already come.
• For the incredible support and care that surrounds us daily.
• For the strength we’ve been given to keep showing up and for the community that continues to carry us.
Comments
Deb Weaver
Stac Wadel
Nancy Pedersen
Powerful but yet simplistic. Keep strong in Faith and Trust His plan. It is His and His only. I will continue with your prayer requests daily. There are no words to ease your pain but know in your heart that there are so many people who are praying and sending warm and comforting virtual hugs. 🌻🙏
Sherie Butcher
Mary
Amy Garvey
Maryetta Coblentz
Serena Amoth
colleen hata
May god hold you all in his arms and carry you through this tough and tiring time
May Avery keep her strength and spirit up to beat this horrible and cruel disease
bless you hugs and prayers for your dear family🙏🙏❤️🌈
Renee Hurley
May your strength and prayers protect your hearts and keep Avry strong through this healing process. My son was 2 when he was diagnosed with a brain tumor, and after 46 surgeries he is now 37 with 3 children. By no means has this been easy, to this day it is still a roller coaster. Every time my phone rings and I see it’s him calling, my heart goes into panic mode. But he is still here and living life, even on the difficult days.
You have a long road ahead of you, but you and your husband have got this. I know it’s hard to see, but this will all just be a memory before you know it.🙏🏻❤️🩹🙏🏻❤️🩹🙏🏻❤️🩹🙏🏻❤️🩹🙏🏻
Cindy Swartzentruber
Martha Seitz
Julianne Miller