August 19, post transplant
In support of
#miraclesforAvryJo
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#miraclesforAvryJo
Day 16,
Day 8 post stem cell/bone marrow transplant
“Job didn't get his old life back. He got a new one.
Day 8 post stem cell/bone marrow transplant
“Job didn't get his old life back. He got a new one.
God didn't restore what he lost. He rewrote the ending and gave him more than he had before. Some pain won't be explained, but it will be redeemed. Job didn't need closure, he needed encounter. And when God finally spoke, the pain didn't vanish, but the perspective did.
Sometimes healing comes through revelation, not answers.”
We’re clinging to this. Maybe it sounds delulu, maybe we’ve officially lost our marbles—but we are holding on to redemption. We’re believing for the exceedingly, abundantly more than we could ever imagine. We have to. It’s our hope. The light that flickers around the bend as we walk through this valley.
I’ll try to update as clearly as I can. One day, I know I’ll look back and see the exhaustion in my words—the typos, the run-on sentences, the incomplete thoughts. But this is where we are.
Saturday, Sunday 8-16,17
Because of the persistent fevers and the heavy use of Tylenol, today she started on a steroid. Every single step is a weighing of risks. The risk of Tylenol damaging her liver. The risk of liver failure down the road. The risk of letting the fever rage without treatment. The risk of starting steroids—the blood thinning too much, the strain on her heart. And the risk of not using them at all, allowing the high fevers to persist and her heart wearing out.
We’re treating this infection as if it’s already in the blood, even though it doesn’t yet show that it is. Just writing that makes my chest tighten under the weight of it all—like an elephant sitting on me.
Every decision comes down to this constant calculation: the balance of risk versus reward as we fight through each symptom.
It means asking:
• What’s the cost (risk) of this decision?
– Could it make the symptom worse?
– Could it create more pain, more side effects, or delay recovery?
– Could it drain energy or overwhelm the body even more?
• What’s the possible benefit (reward)?
– Will it bring comfort or relief, even for a short time?
– Will it help healing long-term?
– Will it improve quality of life in this moment?
The thing about having such a young cancer patient is that so many decisions fall on the parents. It feels like a crash course in Oncology 101—only you’re learning it by walking through it with your child. The constant, heavy decisions… weighing all the possible outcomes… trying to choose what’s best. It is SO. HEAVY.
Crys asked me the other day what I really need. The truth is, the emotional, mental, and physical toll is immense. I half-joked to her that I just want to be a princess—or a queen. Just look pretty. Be woken up and have my ball gown waiting for me, be zipped up and spoon fed. (Clearly I’ve hit my head somewhere.)
Jake and I both agreed that one of the hardest parts is knowing we have to do all of this again at the end of next month. 😰 This first transplant is similar to the first round of chemo—she’ll bounce back more quickly than she will after the second one. But I can’t even imagine what “worse” will look like.
Friday was awful. Constant vomiting. Every time she got her meds, about 13 minutes later she’d throw them up. Outpatient told me as long as it’s within 15 minutes, I can redose. But that’s not the policy here. So each time she vomited, the meds were essentially ineffective. That day her fever spiked to 105, and her heart rate stayed around 215.
Saturday, Dr. Mian came in and recommended starting steroids right away. First, they brought in a special team to get images of her heart to make sure she was strong enough to handle them. Once we got the green light, what a difference! For two days she had no fevers, and her heart rate came down into the 140s. (Still too high, but so much better than over 200.) The steroids gave her body a break—a chance to rest—and she was finally able to sleep.
The change was startling. Instead of agitation and aggression, she lay still, sleeping almost constantly. It’s scary to see her like that—her breathing heavy, her mouth swollen, the mucus so thick that talking is difficult. She doesn’t have the energy to sit up. It looks like death, and it stops my heart. But I know her body desperately needs the rest.
We’ve eased up on TPN and started trickle feeds, just 2 ml an hour, just to keep her digestive system moving. She also got platelets Saturday, which helped with the bleeding in her mouth, and on Sunday she received blood. The nurse was incredible—running four different antibiotics plus the blood transfusion, she stayed in our room most of the day, even an extra hour to get it all done.
Even Dr. Mian’s exams show how much has changed. A week ago, she would scream when he touched her belly. Now she just lies there quietly. He presses her hip deliberately, looking for some kind of response—at least a grunt—because even that small act of resistance tells him she still has fight left inside.
Monday, Dr. Mian came in with encouraging news: her ANC and white blood count are moving! We’d also been waiting for an outside test to see if the bug in her intestinal tract was resistant to one of her antibiotics. The results came back—it’s not resistant! That means we could drop two of her antibiotics, though she’s still on the one that covers MRSA and sepsis until her counts fully recover.
There are still concerns. She’s developed a strange spot on the back of her head that we’re watching closely, and the open wound on her tailbone isn’t worsening, but it won’t heal until her body can. They’ve doubled her GSF (meds to help boost her counts) and the steroids continue to help with inflammation. Those two days of calm were a gift—but now the fevers are back.
This afternoon, her heart rate trended upward again, hovering around 185, and her fever hit 103.5. She’s more restless. Dr. Mian warned us that next weekend will likely be the hardest, as engraftment begins. When her body starts to accept the cells and fight, the fevers will intensify—worse than what we’ve already seen. He explained this so I wouldn’t think it was “game over” when it hits. The ICU is our backup plan if she needs high-flow oxygen.
I called Glenn this morning to check in again after his heart attack—but also because I needed perspective. Sometimes it feels like this journey is more suffering than healing, requiring more endurance than any of us thought possible. At times it even feels like I’m hurting my child more than protecting her. And the question lingers: at what point does quality of life outweigh the deficits?
I think back to the hours we spent making decisions about her future fertility. It was triggering on so many levels for Me, but deep down I know we made the right choice. Still, that doesn’t make it easy. This inpatient treatment plan is expected to last about two years from diagnosis—but the ongoing therapies will stretch for years beyond that. Every decision we make now impacts her future so massively, and I can’t help but wonder sometimes if she’ll resent us for it. How are we even fit to
Make such choices?
Not that we truly have a choice, legally . And Fighting for her life is instinct—because we are her parents. And we will always fight. But I still find myself asking: were we ever meant to play God like this??Because every single second of every single day feels like a battle to defy mortality itself.
Glenn reminded me of the weekend she was diagnosed—how just the day before, she jumped onto the couch beside him, her spirit so vivacious even though she was in pain. He reminded me that same spirit will return, and that she will one day use all of this as a springboard to grow, even in spite of the deficits.
What I’m going to say next may make some uncomfortable, but it’s the truth: in the middle of such intense suffering—when all I want to do is scoop her up, hold her tight, hear her squeal and fight to get away so she can run and play—but instead she lies here lifeless… my mama heart shatters into a million pieces. In those moments, the thought of her safe in the arms of Jesus feels like a better alternative than this hell of suffering. 💔😭
We are so grateful we don’t get to make that choice, legally-whether or not to fight.
So if you’ve wondered about our silence, it’s because words are too heavy to utter.
Tuesday.
We’re down from four antibiotics to two, and her burns look so much better. Dr. Mian said that’s because of our extra care for her skin!
But tonight she spiked a fever again. This is actually good—it means engraftment is starting! Already!! It’s sooner than expected. Her body is going to fight, and hard. She’s rashy, her heart rate is up, and her oxygen dropped significantly. This is expected, but she hates the oxygen and fights against it. Please pray that it doesn’t become a constant battle to keep it on her.
Paula, our NP, said it best: “Avry is the 1% on both ends of the spectrum. She doesn’t follow any rules. She gets it the worst—but when she heals, she bounces high.”
Tonight will be a long night of close monitoring—oxygen, labs, chest x-rays. The nurse, NP, and charge nurse have already been in and out most of the night.
This next week is critical as engraftment begins. Over the past two weeks, bacterial and fungal infections were our biggest concern. Now the threat shifts to viral infections. That means strict PPE and masking for everyone who comes in contact with Avry—no exceptions. We’ll be wearing masks for the next six months. At least it will be fall and winter, right? But truly, if you’re sick or have even been exposed, please understand—this could cost her life. Take it seriously. Even if no one in our home feels sick, she can still catch something. That’s how vulnerable she is right now.
I honestly have no idea how we’re going to navigate school once we’re home again 🙈. We’ll cross that bridge when we get there.
Today Jake and I had some rare time to just sit and visit. (Yes, visit—it feels like we’ve become low-key strangers.) His presence here lifts such a huge weight off of me. I honestly don’t know how I managed the past rounds on my own.
This morning we finally crashed and slept hard for 4 hours straight. At this point, I’ve decided I just can’t care about all the different teams walking in on us while we’re sleeping—there really is zero privacy here.
When we woke up, several people asked how we were feeling. I told Jake the best way I could describe it was either:
“Picture being run over by a raggedy old dump truck that guzzled gas just to get over us, then dragged into the woods, knocked out, and told to crawl home.”
Or…
“Like a hungover, inflamed flamingo who ate way too many dead fish instead of shrimp—once beautiful and elegant, now an unrecognizable species.”
That’s honestly the only way I can put into words how the exhaustion has finally caught up with us after two weeks of very little sleep and intense stress.
If nothing else, there was music in our room today at that description in the form of Jake’s laughter—and for that rarity, my heart was so happy!
We don’t know you’re thinking of us and praying unless you tell us—and it means the world when you do. For you to pause your busy, chaotic day to stop and pray for our girl and our family is everything. It’s humbling and beautiful to hear how many of you have been woken up at 3 AM to pray over us. That’s not random—that’s the Spirit waking you up and putting us on your heart “in making intercession for us.”
Comments
Shelleylthornton
Sallie Burch
Mike and I pray every morning and night for beloved Avery. As parents you both are the finest examples of a true family. I am so blessed to have held precious Avery in my arms when she was 4 weeks old. It was only one day of connection with your family but knew then how special you all are together. Your steadfast love, compassion and bravery will show Avery the way to healing her tiny body. Continued prayers and thoughts always. ♥️☦️🙏🏻
Rachelle Stein
Barbara Austin
Tonynrose07
Kordina A
Amanda Lengacher
Ruth Zehr
God would will continue to give His angels charge over Avrys health,over each of you as He continues to walk with you through this painful journey..most of all im gonna pray that the precious healing blood of our loving Jesus will continue to flow through her little body healing every part,in Jesus name amen..may He give you the strength in every new day that you so desperately need amen🙏💕
through
Ann Byers
Amber Swarey
Jan Debney
Danielle Scavelli
Cindy Hanus
Lynn Kleinsasser
Kaca74
Kerri Kaiser
Sharon Nissley
Nadine High
Peggy Schoener
Sharon Germann
Karen Combs
Lisa Goodwin
Luckey2travel
Cammie Clark
This baby Avry. Make her strong again. Put your arms around this precious family, hold them so tight as they fight this ugly battle. In Jesus name I pray 🙏🏼 AMEN.
Sending love and big hugs. And PRAYERS!! Xoxoxo.
Twilfree
Amy Rohrer
Raquel Nightingale
Cindy Swartzentruber
Anna Dougherty
Irishlife04
Kimdoolittle74
Melisa Yoder
Melisa Yoder
Adriannasage06
Sharon Birkey
Charity Weaver
Diane Kurfis
May He grant you peace, comfort, rest and most of all healing for your baby.🙏🏻
Renee Hurley
But my heart hurts for you and your husband, I cannot even comprehend what you are going through as a team and watching and helping Avry through this day after day. We always look for the greater good and know that our Lord is standing beside us, but I know what you mean when you question your choices. My son is 37 now, and life has been difficult. But each day I pray for life to move forward and for him to be patient with himself and find goodness in each day❤️🩹
Judy King
We have never met, but l feel like l know all four of you from your posts, pictures, and videos. Your honesty humbles me.
I have read all of these comments (and many more), and l cannot think of anything new that is particularly inspiring or comforting. Rather, l will tell you of the things that God has particularly laid on my heart to pray for:
* For complete and total healing of Avry Jo
* l have been praying particularly strongly for Trace. His position in all of this really touches my heart. I pray that God will comfort him in a special way that speaks to a young boy as he is separated from you. Thank goodness for Face Time, Zoom, Webex, or whatever software you're using to have face-to-face conversations with him.
* For personal comfort that only comes from the Holy Spirit. I'm praying that both your bodies and spirits will be divinely refreshed.
* l pray for God's divine intervention especially tonight, Wednesday night.
I became aware of Avery's situation on the day she was diagnosed, through Rose's Facebook post. I do not think the timing on this was accidental, but by God's timing. I have prayed for Avry and your family every single day, sometimes multiple times as the Spirit has led. I'm sure I'm not the only one this has happened to. Rest assured-- your Avry Army is praying round the clock and round the world. We love you, even those of us who have not met you in traditional ways.
Robyn Zampier
Janice Quall
🙏💕
Risa Brubacher
Martha Seitz
Tara Koehn
Neena Spina
Janice Reagan
Gail Barbour
Nancy Pedersen
Sjhoover
Judy Neuenschwander
Y’all are doing such a good job at taking care of your beautiful little family 🤍 praying especially that you have the energy to reach around and keep going. May God give you grace and strength for every single moment 🤍
Joni Lutz
Pam May
Pam May
Rubylee Logan
Julianne Miller
Caroline Donovan
Maryetta Coblentz
Mary Beeler
Wilma Cook
Karen McAdoo
Crystal Stadeli
prayer changes things🙏
May God hold your family in the palm of his hand through this difficult time.
Betty Allgyer
You actually wrote some of the things I have been thinking. How would I feel as a mother being forced to make life and death decisions for my child daily. No, you aren’t weird, and it didn’t make me uncomfortable to read it. I feel such a deep ache in my heart as a mother, for you. Most days, I don’t even know how to pray. But Jesus, have mercy. Bring restoration and healing and please let it be soon!
Carmel Salamone
Martha Seitz