Day +24-27 post transplant
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Day +24 Post Transplant
Thursday, October 23
Good things are happening! ✨
This morning, Dr. Mian came in and said Avry’s labs look great — she’s starting to make her own neutrophils! That means those baby white blood cells are busy and there is life!
Her liver function finally hit the 0.2 we’ve been waiting for the last two weeks! The past couple of days Dr. Mian intentionally shook things up, and we’re seeing results. He warned us there’s a chance it may not stay, so we’re keeping her on the VOD medication for another day. Once we do come off, we’ll continue retesting — it’s not unusual to need it off and on. The plan is to stop the VOD med on Sunday if all continues well.
Her liver and kidney function are now almost completely normal, and the ultrasound showed her liver is nearly back to its normal size — the congestion and inflammation are lessening! 🙌
We’re also cutting down the TPN again. She’ll be off for 8 hours today, working toward a total of 12 hours on / 12 hours off — with hopes of stopping it completely by Sunday . Since we’re cutting TPN, we’re increasing her feeds by 3 ml every 12 hours. Please pray that her little body can tolerate the feeds — we all have PTSD from the amount of vomit this month. 🫣
Today we’re also lowering the steroid dose and will continue tapering over the next two weeks. The steroids have been raising her blood pressure, so she’s on meds for that as well.
Dr. Mian is lowering her platelet transfusion threshold from 30,000 to 25,000, expecting to see platelet engraftment within the next week. He’s also giving Lasix today since she’s hanging onto extra fluid, and she’ll continue receiving antibiotics, antifungal meds, and weekly IVIG infusions for immune support while we taper the steroids.
It feels like one good report after another — and we’re so grateful! We started this journey with 11 pumps on her pole… and I told Avry that when we’re down to just one or two, that’s when we get to go home.
This afternoon, though, she woke up crying, “Mama, I can’t breathe!” 😰 Her oxygen stayed stable, but that familiar look on her face was heartbreaking. Another chest X-ray tomorrow will tell us more. Dr. Mian reminded us this will be a roller coaster as we come off the steroids; she may need oxygen again here and there.
Avry is so ready to go home. She sat up in bed and just sobbed — her little bald head shaking, tears streaming — “I miss my house and I miss my Trace. Please ask the doctor when we can go home.” When Jake came in tonight, the first thing she asked was, “Can we please go home in the morning?” 💔
We saw a few Avry smiles today, and right before bedtime, her eyes twinkled as she talked about sitting around a campfire, eating Daddy’s favorite thin peanut-butter-cup s’mores. That sparkle in her eyes felt like a miracle all on its own.
Jake and I are bone-tired — I don’t think either of us realized how much stress and sleeplessness we carried last week — but tonight, we’re breathing a little easier. There’s progress. There’s hope. And for the first time in a while, it feels like healing is finding its way back because we can see it for ourselves 💛
Day +25 Post Transplant
Friday, October 24
Today marks Dr. Mian’s last day while we’re still in transplant — Lord willing!
As soon as he feels Avry is stable and her meds are reduced enough, we’re going home! He’s very aware that kids reach a point where healing slows inside hospital walls — they need home, sunshine, and family to keep thriving. If everything continues to go as planned, he’s hoping to send us home next week!
He said again this morning with that little grin, “Avry is the one percent, and she keeps us on our toes and keeps us guessing! But when she starts to heal, she bounces back higher and faster than anyone.” And she’s doing it again. 💪
Still, she’s angry and upset most of the time — partly from the awful steroids, but also because she’s completely, 100 percent done with hospital life. She cries in that heartbreaking little voice, asking over and over for reassurance: “We’re not going to stay in this hospital forever, right?”
Evenings are the best. After two long naps, she wakes up ready to color and craft. It feels like forever since she’s looked so bright and alive! The swelling has gone down substantially, and I’m starting to see our little girl again.
You may have noticed the hyperpigmentation on her skin in photos — that’s from high-dose chemo and post-transplant. Over the next few weeks, she’ll get brand-new skin and nails. It just takes time. So for now, she’s our spotted little fawn. 🤍
Tonight, she begged her daddy to read to her and fell asleep listening to her favorite stories. It’s such a precious sight — the way she rests while he reads, her breathing steady, all o her own! All these small moments feel like glimpses of her coming back to us.
Day +26 Post Transplant
Saturday, October 25
Dr. Cohn was on today. She came in and sat with us this morning — never in a hurry, always so gentle and kind. But Avry doesn’t like her anymore 😰; every time she sees Dr. Cohn, she tenses up. Too many memories of painful exams.
She’s been sneezing a bit — a steroid side effect — and having lots of bone pain. We’re hyper-aware of every little change.
And oh, she’s so grumpy. Between the steroids and the cabin fever, she’s had it. I told Jake, “This is one of those times when we ask forgiveness instead of permission…” So we door-dashed pizza and wings and snuck Trace in tonight!
Best “transgression” to date. 🍕💛
Paula (our nurse practitioner) and Brooke (our nurse) didn’t seem to mind one bit. And honestly, it was the happiest we’ve seen Avry in over 30 days. My heart could hardly take it.
The look on her face when Trace walked in — pure joy. They played games, colored, did stickers and puzzles. Trace couldn’t stop laughing. The room overflowed with giggles and life — Room 385 was filled with happy again. Even Blanca, our nurse, stayed a while just soaking it in.
It was exactly what we all needed.
A confirmation that we’re going to be okay. 💛
When it was time for Trace to leave, Avry sobbed, clinging to him, whispering, “People should not ever leave people. That’s just tough.” 😭 Just a few more sleeps under two separate roofs…
After everyone was tucked in, I walked the quiet halls while doing laundry. Somewhere between the laundry and our room on the third floor, it hit me: this won’t always be our life.
One day, I won’t be folding hospital laundry at midnight or scrubbing sheets from Lasix or vomit. One day, we won’t live between these walls. (it’s always just been such a whirlwind. I’ve never really had time to think about it-we’re just always forced to do the next thing , take the next step and cross the next mountain.)
That realization honestly scared me — we’ve spent more of the last eight months here than anywhere else. This place has become home. These nurses — the ones who’ve seen us at our most broken — are part of our story.
Walking the halls at night feels sacred. It reminds me of a Saturday evening at home when the house is quiet, the kids are asleep, and everything is prepped for Sunday. My version of that right now is walking these hospital hallways under dim lights — each hallway holding memories of battles fought and mercies seen.
And tonight, it feels like the safest, most comforting place.
Day 35
+day 27 post transplant
Sunday, October 26
All my life, I've been carried by grace
Don't ask me how 'cause I can't explain
It's nothing short of a miracle I'm here
I've got some blessings that I don't deserve
I've got some scars, but that's how you learn
It's nothing short of a miracle I'm here
I think it over and it doesn't add up
I know it comes from above
I've got miracles on miracles
A million little miracles
Miracles on miracles
Count your miracles
One, two, three, four, I can't even count 'em all
You held me steady so I wouldn't give up
You opened doors that nobody could shut
I hope I never get over what You've done
I wanna live with an open heart
I wanna live like I know who You are
I hope I never get over what You've done
It's not coincidence and it's not luck
I know it comes from above
I've got miracles on miracles
A million little miracles
Miracles on miracles
Count your miracles
One, two, three, four, I can't even count 'em all
Avry is down to three pumps as of today!! 🙌
She was up early this morning, restless and discouraged — she just wants to go home. Jake sat and rocked her for a few hours while she cried, so upset that it’s Sunday and we’re still here. 💔
Last night, Trace went “shopping” in our toy closet at home and brought Avry a few new things to play with. This morning, we got out the Light Bright, and did puzzles and played memory. But truthfully, she’s just so tired of doing the same activities day after day from her room. In just a few hours, we can make it through the whole box of toys.
What she really wants is to go outside. She told me she doesn’t even like to sing here anymore — “It just doesn’t feel right, Mama.” She can’t wait to ride her golf cart again and sing her little heart out! 🎵
One of the first things she says she wants to do when we get home is go to Home Depot — I don’t really know why, but she’s stuck on it. 😂That’s exactly what she wanted to do after her last transplant too! She also wants to go down to the second floor to see Anna and bring her some soup. We’re hoping by next week we can twist an arm or two and make that wish come true.
After the last transplant, we were supposed to go get Avry’s hearing aids, but I felt it was too much — trying to transition into hearing aids while also preparing for the second transplant felt overwhelming. We decided to wait until afterward. Unfortunately, it seems she’s had a bit more hearing loss, so she’ll need to be retested.
The test is sedated so they can measure her hearing nerve response accurately, but with her lungs still so fragile, it’s not worth the risk right now. That will have to wait until she’s stronger.
At this point, the goal is simple: go home as soon as possible so this girl can truly start healing. Even if that means coming back to clinic two or three times a week — home is where she’ll thrive.
When a child is discouraged, they can’t heal. And it’s time. It’s time to leave these hospital walls and go home. 🩷
You know what I just love about this space?
I just read over 90 messages... so much encouragement so much
'walking right along side with us' and daring to feel the joys and heartache with us... there's such a catch in my throat and in my chest when i read through these.
A lot of these messages are from complete strangers who have been here from the beginning of this journey ....
Social media can be tricky.
Sometimes it's fake, filtered, and makes everything look perfect when it's not. It can be deceiving polished and pretend.
But it can also be a lifeline - a bright spot where people rally, share light, and remind each other we're not alone.
It can be fake... and it can be beautiful. Unlike anything else-
It all depends on what we choose to make of it.
Not everyone chooses to share their journey on social media platforms and we honor that.
We've chosen to share not all, but a lot of ours. Because we believe, with every part of us, that life's experiences either make you grow or make you shrink.
If you walk away unchanged
- if you don't let Avry's story touch you, move you, and call you higher - then her suffering is in vain.
Her fight isn't just for her life; it's a light for all of us.
Don't miss what it's trying to
show you.
And for all the mamas in this space - the ones who have agonized over their baby's suffering, who have spent sleepless hours holding their breath and pleading for their childs life -
Meeting you' here on social has been one of the sweetest gifts.
A piece of this journey I wouldnt ever want to
do without.
And to the mamas who have little girls the same age - the ones who've reached out and said, "I can't imagine... but it's changed the way I mother."
You've told me you look at your children differently now... that you've started being more intentional, slowing down, and soaking it all in.
That means everything to
me. Because that's what
Avry's story is meant to do - to remind us all how sacred the ordinary really is.
And to the moms who don't have littles anymore - the ones who have been so intentional about reaching out, checking in, and asking how you can pray or support our family -
Your compassion and kindness have meant more than you know.
You've shown us what it looks like to love deeply and to carry someone else's burden quietly and with grace.
To everyone who's been here - who's offered encouragement, kindness, prayers, and presence...
thank you.
You have no idea how much your love has carried us through.
What I've come to see is that God has a way of directing the right people into your path - people who carry the exact kind of empathy, compassion, and strength you need for the moment you're in.
They show up with hearts that get it, and their presence feels like grace
in human form.
-our story for God’s glory
(A heartfelt thank-you to Diane Horst from Lititz PA
for the beautiful drawing of Jesus holding Avry Jo) that Maria Schuler gifted to us.
Comments
Faith Sommers
Paul and Faith Sommers
Serena Amoth
Martha Seitz
We7
Cindy Swartzentruber
Irishlife04
Abigail Good
Karen Sobczak
Veronica Ward
Rachelle Stein
Margaret Martin
Just stopping by to say I read your updates and we pray for you all. I sure hope too that this week you’ll all be back Home Sweet Home! Love to you all!
Karen Stoltzfus
Gina Miller
God is so big, so strong, even in the heavy when it seems you can’t go another step!
We keep praying!🙏 ❤️🩹
Natsettele
Adriannasage06
Diane Horst
Sherlyn Nikkel
Tara Koehn
Bonita Mack
Jana Wohlgemuth