+Day 19-23 post transplant
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Day +19 post transplant
Saturday- October 18 , 2025
This week has felt very down with a few ups here and there, but it seems to be trending down. We’ve felt like there’s been something brewing under the surface all week—call it intuition.
In the past 48 hours, Avry has needed more respiratory assistance.
This morning I woke up early and Avry’s breathing was awful!! Her sats weren’t horrible, but she sounded scary. I checked everything and momentarily decided everything was okay. She was sleeping hard. About that time, Lydia came in and I said, “Hey! Are you okay with her breathing??” She called the NP right away and ordered a chest X-ray stat. That ruled out anything majorly alarming immediately. Dr. Mian would be here soon.
Dr. Mian ordered a CT of her lungs and chest stat.
We are +19 post-transplant. About this time is when the lungs often take a more severe hit post-VOD (a serious complication of stem cell transplantation where the blood vessels in the liver become narrowed or blocked—sometimes leading to liver failure).
Dr. Mian is suspicious she is either developing IPS (a serious, non-infectious lung complication that can occur after stem cell or bone marrow transplants and is a major cause of mortality. It presents as pneumonia-like symptoms but is not caused by an infection and can be difficult to treat) or pneumonia.
There are no simple, clear-cut tests to confirm either at this point. We are proceeding very cautiously and doing everything we can. We should have a clearer picture by Tuesday or Wednesday.
This morning, I asked Dr. Mian if he was surprised—or if this is where he expected Avry to be. When her liver numbers plateaued so quickly, he also expected the recovery to be quicker.
However, this is still under the “may be expected” side effects of post high-dose chemo and transplant.
Some of you may remember, in the very early days after diagnosis when we were discussing the treatment plan—and how it includes transplant—we were told high-dose chemo destroys 99%, both good and bad. The remaining 1% determines survival. That one percent is what also gets those healthy stem cells, which are meant to bring back life.
Perspective can get a little cloudy. On one side of a coin -If we were to stop treatment right now, there would be a small chance of survival—most definitely an incurable relapse. So does the possibility of her having IPS scare us? -we’re dealing with stage four cancer. All of us are on borrowed time. Avry more so than the rest of us.
Right now, Avry is the angel that continues to grace us with her presence here on earth. Yes, our hearts are a little messy—especially now. On the other side of the coin -There have been a lot of additional complications for us these past three weeks, and I am just longing to scoop her into my arms!! She has so many wires hooked up to her that holding her isn’t possible right now—besides, it wouldn’t be comfortable for her.
We keep going back to the facts: that God trusted this little girl into our care for a time. It’s human nature to clench down and put a white-knuckle grasp on our little family—but we aren’t the keepers of our time or our children’s. And while that’s painfully truthful and stings in ways you can’t imagine, we’re embracing every second of every day and night, finding gratitude in the hard moments like never before.
I’m so grateful that Jake and Trace took two days and surrounded themselves with encouragers. God knew we all needed that!! But I’ll let him tell that story.
Tonight, we are being carried.
We’re taking things one hour at a time, staying alert, and holding steady. There’s still so much unknown, but we’re doing our best to keep perspective, breathe, and keep going—together. We’re thanking God for all of the happy memories and begging him for more.
Because there are no definitive answers- I’m planning to share this update at a later date.
Day +20 Post Transplant
Day 28 — Sunday, October 19, 2025
It was hard for Avry to get comfortable last night. She tried to take deep breaths, then would breathe short and fast to grab air before crying, “Mama! I can’t breathe!” It’s such a helpless sound—what she’s feeling really does feel and look like drowning. She was restless through the night and often crying. It’s such a hopeless feeling.😰
Dr. Mian came in this morning and spent time with us. His calm presence and the way he answered every question helped so much. Transplant is outside the scope for most of the other nurses and doctors here. They’re incredible—but their background is oncology, not BMT. And BMT goes against much of traditional oncology training. For example, Tylenol is avoided in BMT but commonly used in oncology. Steroids, on the other hand, can be used in BMT, though not in oncology. These complications sit outside of what’s familiar for most of the team, and last night there were several differing opinions, which was unsettling. (this is just one small example)
Last week I saw the shift. Because I didn’t feel like I was being heard, I just assumed I was being overdramatic. In hindsight, I was right—again. And I can’t tell you how much I do not love being right in this situation. I should’ve advocated harder. I should’ve trusted my gut. My intuition has not been wrong yet. But it’s hard—because I’m a mother, not a doctor. Last evening the NP encouraged us to keep advocating for Avry, reminding us that while the doctors have the book knowledge, we know her. Last week my question repeatedly to the doctors as if her stomach is getting smaller and her liver numbers are looking better than why is she needing more and more oxygen??? IT just didn’t make sense to me. SHE WOULD WAKE UP DURING THE NIGHT OUT OF BREATH. And not only that, she developed a cough.
Dr. Mian confirmed they saw white patches on the lungs- that Avry has pneumonitis—inflammation in the lungs caused by a combination of chemo, fluid buildup, and VOD.
We started antibiotics yesterday to cover for infection, though we won’t have results until Tuesday to know if this is bacterial pneumonia. If it’s viral, we’ll know with time. Dr. Mian’s hunch is that this is IPS (idiopathic pneumonia syndrome), and we’re treating it as though it’s all of the above—because right now, there’s no clear test or box to check, only a process of ruling things out.
I never want to be the writer who cries wolf. It’s a paradoxical statement while fighting cancer. I try to balance emotions with fact while conveying the journey in its raw form but I
still want to be honest about how hard it is to stay in balance all The time.
When Avry was first diagnosed, Jake and I completely fell apart. For that first hour, we allowed it—then we got up, dusted ourselves off, and pulled it together for our kids. When we were first introduced to the oncology floor, I realized quickly that while this was shocking and devastating to us, it was everyday life for the staff here. You learn fast to mask your emotions—because you have to. You can’t fall apart every time. Up until this point I feel like we have done very well- but this is just different.
Avry has stage 4 cancer. While the success rate for her protocol is high, everything about this still feels like a gamble. The past three weeks have been heavy, and the past three days especially—she’s gotten progressively worse. It’s hard not to feel fragile.
The hope is that within 48 hours we’ll see a marked improvement in her breathing. If this truly is IPS ( serious, non-infectious life-threatening lung complication that can occur after a stem cell or bone marrow transplant), steroids should help quickly. There are risks, of course, but by the time the test results come back, we should know more about whether infection is a factor. None of these complications are outside the scope of BMT, but they’ve certainly been weighty.
We are deeply grateful for Dr. Mian and his experience. Jake told him through tears this morning that this is scary for us—and Dr. Mian did so well validating our fears. And walking us through this next part.
I’ve never once given up on Avry, and I never will. I will always fight with 100 percent of my being. But there are moments when watching her struggle, seeing her so sick, it can feel like our dreams are slipping away. Watching her suffer undoes me like nothing else. It’s easy for life’s beauty to dim under the weight of this—but we’re still holding on to hope.
October 21, Tuesday
The test days are getting increasingly hard. Steroids are awful. I’m so glad that Jake is here because there’s no way I could handle this on my own.
Today we have to move rooms because we’ve been here for 30 days! Thirty days!!! It’s hospital protocol that after 30 days, the rooms need to be deep cleaned — which is a very good idea. But when we saw the new room, I realized our room was actually cleaner than the new one! We are so particular, and every single day it’s my own personal challenge to keep this room spotless and organized.
Some days I can hardly believe we’ve been here for 30 days already — and that we haven’t totally lost all of our marbles being between these four walls!
Tonight, Eric and Crystal hosted an hour of prayer for us — one of the most meaningful hours! Over 60 people met on our behalf. We feel so carried, so lifted, so encouraged!!
Later, Avry snuggled up and whispered, “Mama, I just love you so much.” She wrapped her little arm around mine, dreaming out loud about green velvet Christmas dresses with red ballet flats. I adore her little mind.
Day +23 Post Transplant
Wednesday, October 22
Avry has been off oxygen for almost 24 hours. She has had a very good response to steroids. Today is the fourth day on steroids, and tomorrow we will begin to wean her off. We’re switching to giving them through her NG tube instead of on the pump — that way, when she’s ready to go home (hopefully in a week or two), we can continue to wean from there.
Her Karius test was negative!!!!!!! This is the test we’ve been waiting for! Everyone is breathing a huge sigh of relief — and the angels are crying, “H-O-L-Y! All creation cries holy! You are lifted high, H-O-L-Y! Holy forever!”
Her Karius test being negative means that we are not dealing with viral or bacterial pneumonia or any kind of infection in the blood!!!!
This means we are not dealing with a blood infection. Most likely, ten days ago we were — and that’s partly what triggered what we have going on now.
Avry’s liver function is .3 — it finally moved a point after two weeks of staying the same. We need it to come down to .2 and stay there several days before we can stop the VOD (liver failure meds).
Her weight is almost back to what it was when we brought her in over a month ago! This is very encouraging and means that the fluid is coming off of her lungs organically. What I mean by that is the combination of medication and therapies are working!
Today we are going to stop the morphine drip. We’ve been very slowly decreasing that over the past week. Dr. Mian sat down with the pharmacist this morning, and they’re trying to cut back on as many medications as possible in an effort to give her liver the break that it needs.
Today we will cycle the TPN (her nutrition thro her broviac catheter) — we’ll pump it faster to give her body a 6-hour break. And with that, we’re going up 2 ml on her feeds. It’s a slow process, but as her body heals, she can tolerate more. A week ago, she was vomiting everything we gave her because we didn’t have a clue about the internal storm that was raging. 😰
Her weight is almost back to what it was when we brought her in over a month ago! This is very encouraging and means that the fluid is coming off of her lungs organically. What I mean by that is the combination of medication and therapies are working!
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Part of her official diagnosis is Pneumonitis — inflamed lung tissue, often caused by infections, chemotherapy drugs, and or graft-versus-host disease (GVHD).
She also has , IPS, which stands for Idiopathic Pneumonia Syndrome (IPS) — a serious, often non-infectious, life-threatening lung injury complication that can occur in children after a bone marrow transplant, typically within 120 days. IPS increases the risk of mortality by 50%, but early diagnosis and treatment with therapies like high-dose corticosteroids and agents show promise in improving outcomes.
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We caught it on time!!!🙏🙏
What we didn’t know for the past five days was if it was working — if we were treating properly, and what the outcome would be. It was like taking a stab in the dark and hoping we hit the target. This dosage of steroids is very high — higher than you or I can imagine — and she can only safely be on it a few days.
Dr. Mian stressed this morning that making that call to start steroids on Sunday was one of the hardest decisions to make. He said it might sound easy, but it’s because the risk is so high. Starting steroids was his “Hail Mary.” (This term refers to a desperate, high-risk protocol with a very low chance of success or unknown trigger — an absolute last resort, often attempted when all other, more standard options have failed to save the patient.)
By giving her these very high steroids, it brought the inflammation down in her lungs — calmed the storm so her body could start healing — and bought us time until we knew exactly what we were dealing with. The scary thing about steroids is that they can also mask serious symptoms, so we really didn’t know the past few days what direction things were going.
He made the right call — and the relief is unmeasurable.
But I want you to know — while we are breathing a sigh of relief, we are still walking very, very cautiously. Her body is still incredibly fragile, and she cannot get sick right now. The steroids have taken away her immune system again, leaving her defenseless.
We were able to see the chest X-ray of her lungs today — and oh, what a sight.
On day one, you could not even see the outline of her lungs. They were covered in white patches and looked so unclear.
Today, you can see the full outline of her lungs.
Clear. Defined. Beautiful. Proof that healing is happening.
Dr. Mian also stressed that we are not out of the woods until we are out of the woods. Coming off the steroids is almost as serious as going on them. Avry is at a very high risk for infection, and viruses may be reactivated as she’s coming off. And weaning off the morphine drip combined with steroids is miserable for everyone. 😰
Last evening our support group rallied and gathered over Zoom. What a meaningful 30 minutes of covering us in prayer! If you were part of that — thank you for carrying us.
It’s been a very difficult week and a half. We have a lot of messages to catch up on. Thank you for showing us how much you care.
Thank you for purchasing #MiraclesForAvryJo and for the monetary gifts we have received over the past few weeks. God has been showing up BIG through His people.
We’re not out of the woods yet. Knowing what we’re dealing with — and that the treatment is working — is seeing the light breaking through the trees.
God keeps parting the sea, one wave at a time, and we’ll keep walking — even when it’s on trembling legs.
Jake ♥️Rose
Jake ♥️Rose
Comments
Mahlonhersh
Veronica Ward
Lois Miller
Martha Seitz
Maryetta Coblentz
Maryetta Coblentz
Nadine High
Valerie Lapp
Sheryl Butcher
Kathryn Torkelson
That drawing is precious 💔💞
Rachelle Stein
Cammie Clark
It’s God. God is holding you up! God is carrying you all. God is protecting Avry. May he lay his hands on her and heal
Her. May he make her healthy again. That’s my prayer. My hope. My dream
For you all to be at home, All
Four of you. Laughing, playing, having meals at your family’s table. Avry sitting on the counter top, helping you cook. And just being together, taking golf cart
rides!!! That’s my prayer. I will keep praying, I have you on my mind daily and hope for each hour your baby girl improves. She is such a precious sweet soul. You keep believing we will keep
praying. I wish you restful nights, I wish and hope precious Avry gets over this hurdle so very very soon. Sending love and prayers. I will stay hopeful for you all, I will keep praying for you for Avry! May God wrap his arms around you and Avry, Jake and Trace.
Much love and prayers ;
Cammie. Xoxo
Mary Beeler
Praying and holding you all close. 🙏🏼🙏🏼
Summer Carter
Loretta Thomas
Martha Seitz