Day +8, 9 Post Transplant
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Day +8 Post Transplant
Tuesday, October 7
The team came by this morning with updates that carry both relief and continued prayer needs. Here’s where things stand with our brave girl:
Avry’s chest is clear, and the doctors are not concerned about her distended belly—it’s the result of fluid buildup outside her vascular system. Her weight is holding steady as they carefully monitor her fluid intake and output.
She’s been receiving large doses of Neupogen (protein that boosts the production of infection-fighting white blood cells in the body.)
and this morning we finally saw movement—her white blood cell count is 400! 🙌
This means her body now has what it needs to begin healing and start stem cell engraftment.
But as beautiful as that sounds, it also brings excruciating bone pain. These are the moments she doesn’t want to be moved or touched, so we’re managing her pain closely.
Her hemoglobin remains stable, and she’ll likely receive a blood transfusion tomorrow.
Today, she’s getting platelets because her liver medication can cause bleeding; they’re keeping her platelets near 30,000 After that, she’ll receive Lasix to help balance fluids.
They’re also adjusting her TPN (her nutrition thro IV) today to help bring up her low electrolytes.
Her liver function looks better today! 🙏
For those in the back—this is a miracle in itself!! We’re praying she has hit a plateau with this complication and is turning the corner. The improvement is likely due to the combination of higher-dose steroids and her VOD (liver) medication.
Every step of this process is about staying one step ahead of her body.
She’ll continue the VOD treatment for the next week and remain on high-dose steroids, which helps control inflammation but come with their own risks.
A week ago, her heart rate was in the 220s. Today, it’s down to the 130s—still high for her, but a major improvement. The steroids have calmed much of the inflammation, though they can mask infection, so her team remains alert and cautious.
One of her blood cultures came back positive, but the doctors believe it’s most likely a contaminant rather than a true infection.
It was found in only one lumen of her Broviac catheter, which is encouraging. Still, they’re treating it seriously and have started her on a new antibiotic while closely monitoring her kidneys.
If all continues to trend well, the plan is to begin weaning her off steroids by Thursday—a careful process that takes several days.
This positive culture adds a small hurdle, but we’re meeting it with faith, prayer, and the same determination that’s carried us this far.
How You Can Pray
Please pray with us:
💛 That the positive culture is only a contaminant and not an infection.
💛 For continued liver improvement and full recovery from VOD.
💛 For comfort from the intense bone pain that comes with engraftment.
💛 For her body to respond beautifully to the stem cells and begin full healing.
💛 For peace and rest for all of us as her body continues this sacred rebuilding process.
A note from my heart.
Trace didn’t know I was coming home. I got home and he was in the shower, so I waited until he was done and in his room. Then I ran up the stairs, knocked on his door, and when he saw me, he just screamed, “Mom!” and ran straight into my arms. This was everything 😭
I had to remind him to finish drying off because I almost didn’t need to take a shower myself after that 🤗 ! It made me smile—remembering all those times I used to remind him to go dry off “just a little bit more.” He was a total chatterbox, and I finally told him, “Brush your teeth, and then you can talk afterward!”
I made him his favorite pancakes for breakfast and took him to school. He tried to find every excuse to stay home with me, but I promised I’d try to be there to pick him up after school and spend a few hours together before heading back in tonight. That satisfied him.
What he doesn’t know is how much I needed to see him—to be around his vivacious spirit, to sit beside the healthy child, to witness one of my children thriving physically. What he doesn’t know is how much he’s holding my heart together.
I can’t even express how much I miss that boy—and how much I treasure every single minute of giving him my undivided attention.
He’s back. After spending hours with him two days in a row, I got to see the kind, sweet version we left behind in March. I know that no one can take my place, but it also shows that when you do nothing else but be present—without distraction—it’s not that difficult.
I’ve been beyond frustrated hearing that he’s “too much,” or “a handful,” or that there’s something wrong with his behavior. It’s so hard being 100% helpless to do anything while I’m in the hospital fighting for Avry’s life.
This is when I feel like an old soul—my heart cries out, “Where are the grandmas and the grandpas like what I grew up with? Where is the village? Where is the local community?”
I just need one person to step up and step in. Even if it means faking a mother’s unconditional love—just show up. He’s nine. He’s not a monster to fear. It simply requires empathy and compassion.
But it’s “too much.” He’s ‘too
Much.’ Everything is too much. Well honey, cancer is too much, too—but we don’t get to opt out.
I guess what I’m realizing is that maybe I’m the odd one. Maybe my standards are too high. So we’ve lowered the bar—the goal now is just to keep him fed, taken to school, and to baseball. He’s been living on breadcrumbs for seven months. Lord willing, we have only seven more to go.
And when I hear people tittering about the pettiest “problems” and being tipped over the edge by them;
I ask the Lord to restrain me—physically and verbally.
Like I’ve said before, I don’t wish cancer on anyone…
But some of y’all need to be shook to the core by it!
Because when you’ve knelt on the cold hospital floor, holding your child’s hand for months on end and wrestled with God for her life, you realize how petty most of our worries are.
Stop getting your shorts in a wad over things you can’t control. Stop getting your shorts in a wad over things that wouldn’t even matter if you died tomorrow.
Just stop.
It doesn’t cost you anything to be kind.
Do better. Be better. In your sphere.
That being said, I’m so grateful for his teacher. He told me she’s one person who’s truly in his corner—it’s because she knows how to offer security by setting boundaries permeated with love. I deeply appreciate the steady way she shows up for him.
We’re grateful for the Psychologist, Dr Paul- a mentor and colleague who has offered a steady guiding hand thro all of this journey. And I’m not asking you to move across the country or try to fix anything. I’m simply sharing my heart—so that years from now, I can look back and remember this moment, this tension, and let it shape me into someone who serves with greater compassion and understanding.
I can’t adequately express the pain of watching him struggle—of not being able to be there as consistently as I long to be. Last year, we faced an incredibly difficult situation at school that Dr. Paul graciously- in part summed up as “the struggles you run into with a very intelligent child.” During that time, the school board advised us—his parents—to stop advocating for him, to stop “taking his side,” as if our support was the problem; entirely missing the root irritant.
But I’ve seen firsthand what happens when parents stop advocating for their children. 💔😭 While a child’s perception may not always align with an adult’s, who are we to gaslight them into believing their perception doesn’t matter or that it’s wrong? Their thought patterns need our guidance, yes—but their voice deserves to be heard.
I don’t share this out of anger, frustration, or bitterness. Please hear my heart—I share this to offer hope because experience is the best teacher.
If we’re not sharing our painful experiences to help and lift one another along life’s journey, then the pain served no purpose. Our stories—especially the hard ones—were never meant to be buried, but to become bridges of compassion and healing for those who walk beside us.
If you’re walking through a hard season, trust your instincts and the gentle leading of the Holy Spirit. Not all of us are called to “go with the status Flo.” Some of us are called to swim against the currant to make it better for those coming after.
And please, I beg you—validate your children. Sit with them. Really hear them—not just with your ears, but with your heart. Listen before you correct.
In positive psychology, our first and greatest responsibility as parents is to love our children—no matter what, even if. That kind of love doesn’t stop with parenting; it flows into every relationship within our sphere of influence, especially those first five key relationships as Dr. Paul refers to. Organized religion has clouded this basic human courtesy of interaction.
And as he reminds us with such gentle wisdom, “Nine-year-olds will spend 96% of their time figuring out how to get what they want.”It’s not manipulation—it’s development. They’re learning, testing, growing. What they need most in those moments is not our frustration or control, but our compassion, patience, and steady love that reminds them: You are safe. You are seen. You are loved. And then they get to grow into creating better for themselves and everyone around them.
—Psychology Practitioner over and out. 😉
We see God’s fingerprints in the smallest of details—like her heart rate coming down, her liver numbers stabilizing, and that little white count finally showing up. These are the mercies we cling to.
Thank you for praying, sharing, and standing with us in faith.
Your love carries us through every long night and every hopeful morning.
Day +9 Post Transplant
October 8 • Day 17
Dr. Mian shared this morning that he’s feeling optimistic about Avry’s liver function. Her numbers have finally plateaued, and we’re beginning to see them trend back down. That’s good news.
But as with most things post-transplant, there’s a layer of complexity beneath the surface. Her fluids are a bit out of balance — she’s actually dry and needs more fluid, yet she’s also holding extra fluid outside of her vascular system. In other words, she’s dehydrated and overloaded at the same time. We can’t give her more fluids because her tissues are already retaining too much, but we have to keep her hydrated enough to protect her kidneys from the VOD medication.
It’s a delicate dance — and while it makes some heads spin trying to follow all the moving parts; it’s fascinating to us but also a reminder of how we are truly fearfully and wonderfully made!
Her belly remains distended and sore, so today’s focus is all about carefully managing her fluid balance, platelets, and a blood transfusion.
The Infectious Disease team also came by. They’re concerned about the positive cultures that came back from Monday night. For now, we’re running additional cultures twice a day for the next several days. What they’ve identified is something that grows within 24 to 36 hours — and while most of the major, scary bugs usually show up within the first 12 hours, this one took a bit longer. That timing can indicate a possible blood infection.
With a transplant child who’s just endured high-dose chemo, that’s something we take very seriously. Blood infections can be incredibly difficult to get ahead of, and if one takes hold, it can make the rest of treatment an uphill battle. Worst-case scenario, it forces
treatment to stop.
Dr. Mian’s gut feeling, based on experience, is that this is likely a contaminant rather than a true blood infection — but he was also clear that it’s outside his specialty, and we’d rather be overly cautious. Because if she is fighting an infection, her high-dose steroids could easily mask the symptoms.
To help rule out the possibility of a line infection and see if anything is affecting her heart, Avry had an echocardiogram this afternoon. The results should help us know whether the infection may be related to her central line or spreading elsewhere. We’re hoping to hear more tonight, but it may be tomorrow.
Both the Infectious Disease and Transplant teams have assured me that they’re treating this as a potential blood infection and giving it the full respect it demands.
And even with today’s glimmer of hope about her liver, Dr. Mian gently reminded me —
“We are not out of the woods yet.”
Yesterday, we learned that insurance denied radiation.
Right now, there’s a team actively working to secure a facility somewhere in Texas that can take Avry next month—Lord willing.
The week we were first diagnosed, I remember standing outside the two heavy sets of doors that lead to the oncology floor. They can’t be opened without a badge, so every time we pushed the button and waited for someone to let us in, I would whisper a quiet prayer:
“God, I know You are going to fling open doors that no man can shut.”
Even now, months later, I can’t go through those same doors without whispering that prayer.
And He has opened all
The right doors for us—100% of the time. Sometimes it’s been in the final seconds, and sometimes in ways we never could have imagined.
So yes, it’s deeply frustrating to be denied essential care that this warrior needs. But God…
He’s never failed us yet—and I believe with everything in me, He won’t now.
-from one mamas heart to another
-from one mamas heart to another
Comments
Deb Weaver
Malinda Koehn
Rosanne Gingerich
So so sorry. ❤️🩹 my heart hurts for all of it.
Clineclan3
Vicky Plett
Thanks for truly bearing your heart in your updates ❤️🩹 my mama heart aches to hear what you’re all going through.
Just wanted to let you know that we pray for you and your family every day.
Kendra Neuenschwander