August 15, Day 4 post transplant
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Tuesday, August 12 – Day One Post-Transplant
The night was long… or maybe I should say short. At 10:30 PM, Avry suddenly got a burst of wild energy and announced she wanted to craft! Meanwhile, Jake and I were about ready to fall over. I had already mentally committed to bed, but I promised her I’d join. Jake looked at me and said, “You know you’re incredible.” I grinned and said, “Thank you, yes I know,” though truthfully, I didn’t feel like digging out the craft supplies at all.
She was determined—so much that she’d lay her head on the table between brush strokes just to keep going. She’d been awake since 6:30 AM, and her body had been through so much that day… how was she still going?? I asked the doctor if maybe it was a sign the stem cells were already taking root and making her feel amazing 😉. “No,” they said—unfortunately, we won’t know if the transplant is viable for another 2–3 weeks. It’s more likely that it’s everything going on in her body and everything being pumped into her, is simply keeping her from resting. The amount of medication she’s had would knock grown adults out for days. Kids really are the most resilient creatures.
So, we crafted until 11:30 PM and finished her flamingo for the door—made from a paper plate, pink paint, tissue paper, and orange construction paper for the legs.
(She became obsessed with flamingos about 10 months ago, calling them “ba-bingos” and inventing her own stance—one leg tucked behind the other, arms overhead, hands making the flamingo’s neck. She’d strike her pose often! People never expect her to say flamingos are her favorite animal when asked, but they’re such a fitting choice. In many cultures, flamingos represent strength and beauty—strong-willed, flexible, able to stand on one leg for a long period of time no matter what’s happening around them. That’s our Avry Jo to the core.)
After we hung the flamingo, the NP, charge nurse, and Avry’s nurse came in, and we discussed every possible way to help her rest. It was baffling—she had not slept at all. She’s also running a fever, which makes the itching unbearable. The NP called Dr. Cohn, and together we came up with a plan.
We finally convinced her to lay down. I tucked her in, climbed into bed beside her, and Jake shut off the lights. Within minutes—finally—she was asleep.
That peace lasted about three and a half hours before she woke up vomiting and in pain. The whole room was instantly awake. Poor baby. We sanitized everything, started a load of laundry, and tried to settle in again. Jake and I took turns “sleeping,” while Avry laid in bed coloring on her iPad for hours. I reapplied lotion every 30 minutes. Shift change came and went.
By morning, neither Jake nor I felt entirely human. I dragged myself into the shower, then went to switch over the laundry. That’s when we noticed new burn sites. We probably should have known this could happen—she reacted to immunotherapy every single time. Avry’s body has always been the rare exception, and this is no different. No one here has seen this in their own transplant patients at other facilities, but it does happen.
When Dr. Cohn and the NP came in, she sat down—never rushed, always caring deeply about our questions and about Avry. (She’s a mom, too.) Shaking her head at the no-sleep situation, she said, “Avry is a very special girl. Her fire and grit are unmatched! She’s got everything she needs to fight this. Such a strong spirit.”
(No idea where she gets that. Definitely not from her indecisive, go-with-the-flow, happy-to-follow, laid-back, chill-to-the-core kind of parents 😜— yes, that’s sarcasm.)
Before her visit, the oncology team had already been brainstorming. Dr. Cohn is recommending we bring in palliative care to help find the perfect combination of medications so Avry can rest, sleep, and be comfortable for the next two weeks until her counts start climbing. (And before you panic—palliative care here is only about comfort, NOT end-of-life care. Read that again.)
I was reminded today of when we found out she was a girl. We had zero girl names we agreed on. Trace was named after a dream I had, so Jake insisted it was his turn. I never imagined I’d have a daughter named Jo. Nothing against the name—it just wasn’t on my mental list. But before I could even protest, Jake begged me to at least think about it.
It took four weeks, and the name grew on me, and I came to love it with all my heart. It suits her perfectly. Avry kept trying to come into the world long before it was safe—so many doctor visits. I was just ready for her to be here. How bad could it be? Previously, I was used to a preemie. One day, I told Jake, “Good thing her middle name is Jo. I have no doubt she’ll show up wearing Carhartt bib overalls, high-top combat boots, and cut her bangs with rusty kitchen scissors the first chance she gets. She’s coming into this world with an attitude of predisposed position.” I wasn’t completely wrong. 😛 and I wouldn’t have it any other way!
Avry’s fever has been steady since Sunday, so if it’s still present by Thursday, infection control will step in—it’s just standard protocol. I asked Dr. Cohn if she was worried. She said no. “Okay—then neither am I.”
This afternoon, she actually slept for two 30 minute stretches! Shes a little more relaxed now—less aggressive and agitated. Please pray that continues.
But by evening, her fever spiked to 104° 🥵 and her heart rate shot up to 230. We’re sending daily blood cultures to the lab to make sure we’re not dealing with a line infection. Her body is fighting so, so hard. Her little body trembles on the brink—literally trembles.
We need this fever gone in the next 24 hours—it’s crucial for her healing. We’re about maxed out on the meds we can give her to not compromise her organs or the transplant.
She is far too strong and we’ve come too far to be taken out by an infection.
So I am begging—pleading—with every ounce of my heart:
Pray this fever away.
Pray for her body to stabilize.
Pray for infection to have no place here.
Pray for her strength to rise again
I won’t be sharing updates every single day post-transplant by I do also want to have some sort of a journal to look back on.
Today —the mucositis is worsening, and the burns have intensified. It’s heartbreaking 💔 Some parts of this journey are simply too heavy, too awful to put into words… but please know your prayers are holding us up. We’re clinging to them, grateful beyond measure, and trusting God to answer through the faith of those who love us.
PS.
(It took to much emotional energy to send this so it sat unscheduled in my notes for the week)
Wednesday, August 13. Day 11.
Day 2 post transplant
We slept about 3 to 4 hours last night. Vomiting due to inability to swallow, nausea, itching, wound care for her burns… the nights are long and intense.
Today was a big day. Since it’s day four of high persistent fevers,
Infectious Disease Team;
Wound Care Team
Ear, Nose, and Throat;
Palliative Care;
Ultrasound;
CT scan —
is what happened today. Trying to keep her comfortable is all involving around the clock.
It felt so naked and exposed to be able to mask up and leave the room for CT after being in isolation for over a week now.
Avry Jo was absolutely terrified of “going in the hole” for the CT scan—full-blown hysteria when we entered the room. The nurse and Janessa from Child Life were right there with us, trying every trick we knew to calm her, but nothing touched it.
We knew we had to get her to lay down. But how do you convince a little girl whose body has been through five + months of trauma to trust that this giant, whirring machine won’t hurt her? There was no comfort big enough to break through her panic. I did. Not know what to do! I was at my wits end along with everyone else in the room. The super ugly green N95 masked and absorbed my breaking heart for my little girl😭💔.
Finally, I grabbed a lead apron, climbed up onto the CT gurney, and laid down so we were head-to-head. I quickly pulled her down next to me before she could protest and took her little arms, lifted them above her head, holding her hands gently, and told her to close her eyes with me. Seven full minutes. We talked about popsicles and the three baby goats she’s counting on, and swimming in the pool, as I got scanned right along with her. It worked!!!!! We did it!
And you know what? Not one person in that room made a big deal out of it. I thought to myself—are you kidding me? We’ve been doing this for over five months, and every single time it’s been traumatic. And all this time… I could’ve just been laying beside her? I think maybe they were at their wits’ end and finally just allowed it this time. But now that we’ve done it once? This is how it’s going to be from now on.
The nurse practitioner came in several times, trying to reassess and figure out a plan to treat her symptoms. Wound care stopped by with a few suggestions, but the truth is… nothing will truly work until her counts recover and her body can start to heal.
The Mucositis is still getting worse, and so are the burns. We keep asking, When will they peak? Hopefully within the next week.
Dr. Cohn came in and said that, on paper, Avry looks really good—labs, scans, everything. Which means all of these horrific symptoms are “expected” after high-dose chemo and her organs are doing what they’re supposed to!
It doesn’t make it any easier to watch.
Some moments are beyond intense. And here is where there is only one set of footprints.
Thursday, August 14
Day 3 post transplant
We woke up after just 2 ½ hours of sleep, and for a moment I truly thought we must’ve slept a whole night—I felt that good. But a few hours later, reality caught up. Last night was another night of the same—probably three or four hours total. We keep going up on her morphine drip.
She doesn’t look like the same little girl we brought in before transplant. She’s so swollen, and her body is covered in chemical burns.
Palliative care has stepped in with a really solid support plan for the next several weeks to keep her as comfortable as possible. They’re an amazing team—knowledgeable, kind, and deeply understanding. Kindness and comfort are their specialty, and we’re so grateful to have them on our care team. (And just a reminder—palliative care is not end-of-life care here; it’s comfort care, as I’ve shared before.)
I was reminded today of those early days after diagnosis—when five or six different teams would come by every day, one after the other. There was always someone in the room, always a heavy conversation happening. The emotional drain is impossible to describe. And it’s usually when we’ve finally gotten a few quiet minutes—Avry is sleeping or we’ve just sat down to take a bite—that another team walks in. We could ask them to come back later, but honestly, they’ll just return… and there’s no guarantee it will be at a better time. So, we just roll with it.
I still remember the week after diagnosis when Dawn checked in and reminded me to chew my food. You might roll your eyes, but it’s a very real struggle. Back then, just like now, I had no appetite and had to force myself to eat—which is probably why nearly everything in the café makes us gag now at the very thought of it. And unfortunately, when you’re past 35 and skip meals, you don’t just melt away. One day we’re going to have to re-learn basic etiquette—how to chew food like humans who aren’t being chased by a lion.
The good news—sleeping has improved a bit with some adjustments to her medications. She’s able to relax more during the day and even take a nap or two. At night, she’s still so sick that she sleeps when she can.
Wound care is constant—time-consuming, painful, and never-ending. But Jake and I have found our rhythm. With the two of us working together, we’ve become efficient and strategic.
I can’t even begin to express the relief I feel having Jake here. I didn’t realize just how burned out I’ve been until now—and I don’t want to go a single day without him by my side. His presence eases the load in ways I can’t explain. We’re in this together. 💖
She still has moments when she can sit up and color on the iPad, but anything beyond that—playing, crafting—just takes too much energy.
This afternoon, while she napped, Jake and I actually had a little time to catch up and check in with each other. Yes, we’re here together all day and night, but there’s so little time for even small talk. Those quiet minutes mattered.
This morning we received messages from Scotland and Ireland assuring us of their prayers for us and Avry. So I did a poll, asking where in the world you were praying from - and the responses left us completely undone. From tiny towns to faraway nations, from across oceans and borders, hearts are united in one prayer. This story is so much bigger than anything we can see or imagine. God is at work. He is in the details - We are humbled. We are in awe. And we are so deeply grateful for every single prayer whispered over our girl. You are part of a story only Heaven can fully tell. #miraclesforavryjo #PediatricCancerWarrior #neuroblastomawarrior #stagestrong #holdingontogether
Soon after Avry was diagnosed, we got a lot of questions like, “Why are you not just falling apart? How are you okay?” Honestly, it felt like our friends and family fell apart more than we did. Part of being “okay” in those early days was divine intervention in the form of shock. (I know I’ve said this before.) If your mind could truly process the full weight of a diagnosis like this, you wouldn’t still be standing. And as a parent, you need to still be standing.
We’re getting those questions again. A part of it is gratitude—what we call “pathological positivity.” It’s exactly what it sounds like. I know that sounds strange after such a devastating diagnosis. (And I want to be clear—this is not the trite, fluffy “just think positive” you hear from motivational speakers.) It’s the kind of gratitude that comes when you realize what couldhave been… the fact that we caught it… and that we see God so vividly in the details. That kind of perspective fills you with a perfectly whelmed gratitude for what is.
And then there’s the truth we keep reminding ourselves: this really isn’t about us. There’s a much bigger picture we can’t see—and might never see—on this side of eternity. Yes, we’ve wrestled with God on many levels. But our faith and trust in Him remains: no matter what, even if, He is still good.
There’s also a sense of unworthiness that God would handpick our little girl to impact so many lives. That truth could just as easily make a parent angry—that it’s our child who has to suffer, who has to face unimaginable pain. And yes, there are moments in the middle of the worst suffering where the injustice of that reality hits hard.
God is the giver of life, and He loaned these two beautiful children to us for a time. We live with the conviction that He will bring something beautiful out of this horror.
And lest you think we’re not human—this perspective didn’t just appear overnight. It’s been forged through a lifetime of personal tsunamis, and longing to understand how to think about repeated hardship. Learning how to operate the equipment of our own minds and learning principles that shift our fundamental perception—upgrading not just mental health, but relationships too.
It’s learning to see every problem—from the mildest disappointment to the greatest tragedy—not as a “problem,” but as a ‘proportunity.’ The same boiling water that hardens an egg will soften a potato. The difference is not in the water (circumstance) —it’s in what’s in it.
It comes down to attitude. By the 18th century, “attitude” referred to posture—both physical and mental. One’s way of thinking or feeling about something. Attitude is about choosing a position. Because when you live as a victim to your circumstances, you strip yourself of the ability to choose—and you shut out your power of choice. God doesn’t give His hardest battles to His “strongest soldiers”—He gives opportunities to lean on Him, trust Him more fully, and choose how you think about your circumstances.
We don’t know what God’s full intention is. We don’t know His plan. We dont even know how all of this will end.
What we do know is that there are moments—especially this week—where falling apart in the corner would be so much easier than exercising our mental equipment and choosing a position of attitude. Because the default is always down. And unless you’re actively choosing your thoughts, you’ll spiral into the deepest, darkest basement of basements.
We’ve let ourselves spiral a few times this week—but never for long. Sometimes we need a hard cry. Sometimes we fall apart and question everything. Sometimes it’s silence. Sometimes it’s tears. Sometimes it’s letting our emotions take over for a hot minute. Because the soul-crushing anguish of watching your own flesh and blood fight to live is even too sacred for the page.
But we always resurface swinging.
We are committed to fighting.
Committed to trusting.
Committed to believing.
Because we know without a doubt—we trust the Creator who gave life for a purpose.
“Feels like it's too much and you
Wonder if He even cares at all
Well, hold on tight to what you know
He promised He won't let you go
Your song of healing's written in His scars—-
God is in this story
God is in the details
Even in the broken parts
He holds my heart, He never fails
When I'm at my weakest
I will trust in Jesus
Always in the highs and lows
The One who goes before me
God is in this story.”
Friday August 15
Not much has changed.
Avry is still consistently running very high fevers. But we are breathing a sigh of relief. Now that we have found out that she has a bacterial bug due to the G.I. tract (mucositis). Everyone is breathing a sigh of relief at knowing what the cause is. It doesn’t mean that she’s out of the woods. This allows us to treat specifically.
Today, Jake finally got her convinced to use the suction herself!! We are so incredibly proud of her!! She was so afraid of the loud noise it makes. (think about the suction straw at the dentist)
We’re looking forward to a quieter weekend, with many of the specialty departments away.
We want to extend a heartfelt thank you to the incredible fundraisers and summer Bible schools who have so generously given monetary gifts to support our family during this season. Your kindness, and generosity are not only meeting practical needs, but also filling our hearts with encouragement and hope. We are humbled and deeply grateful for the way you’ve chosen to stand with us—it means more than words can ever fully express.
Thank you for checking in—it’s never too much or too often. 💖
Even when we don’t answer. For reaching out to Jake, for covering us in prayer, for sending rainbows and flamingos that brighten our days, for every tangible way you’ve shown up… we feel it all.
We need you. And we are so deeply, humbly grateful for you. 🌈🦩
Rose for the Schapansky’s
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Connie Kreider
Martha Neuenschwander
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Faith Sommers
I had a God-moment on Monday… we were in Ohio for a conference and “by chance,” no, by God’s timing, I met Megan, the young lady who is heading to Texas to help your family. I wanted to send all my hugs and love with her. I sent blessings 🙏 we know that even in the hardest valley of the darkest place, GOD is with you.
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Praying from Nevada