Transplant Number 2 Monday, September 29
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#miraclesforAvryJo
Transplant Number 2
Monday, September 29
There wasn’t much sleep again last night. The nausea and vomiting always seem to hit an hour or two after we fall asleep, and once it starts, it’s nearly impossible to get back to sleep. Even then, Avry is so sweet, thoughtful, and polite—always determined to makes us smile, even when she feels miserable. She’ll crack jokes or keep us entertained while we clean up and sanitize the room. She’s such a little sweetheart.
The night was long. The hallucinations were real. She was restless, often moaning or crying.
This morning we were in no rush to wake up. Avry slept in—and so did we. But the moment she opened her eyes, she wanted to dive into her craft box. We spent the morning making sand art and stringing beads into lanyards and keychains. One of the delights of having a little girl is that you get to relive all the “little girl things” right alongside her.
I walked down to the gift shop and came back with a handful of balloons. A couple of nurses peeked through the door as I walked in, smiling—it felt like the kind of day that needed to be celebrated.
Speaking of hearing loss-I sneezed this morning and Avry
Hollered out ‘ bless you
mom.’
I said thank you but she continued to say ‘ bless you mom’ three more times. Jake and I just looked at each other and smirked. Each time she said it just a little louder. And we’ve noticed she’s been talking so much louder too. I think she gets desperate because she can’t gauge how loud she is. But here she is making sure that I am blessed properly. 😂 bless her mannerly little heart!!
Between 9:30 and 10 a.m., they started her pre-meds for the second stem cell (bone marrow) transplant. The room was filled with nurses and, outside the door, a whole team of busy bees outside the door, preparing the cells.
I couldn’t help but think back to her first transplant. That morning, Avry was far too sick to sit up, much less string beads or do sand art. The atmosphere then was hushed and heavy. But today was different.
Dr. Mian, from the transplant team, is on this week. He saw right away how much stronger she is and commented on what a difference he’s seen it makes to have had that time at home between transplants. He was pleased with her weight gain and her labs. Yesterday we stopped tube feedings, and because her intestinal tract is raw with sores and badly needs a break and because
she has a little extra on her, he’s in no hurry to start TPN. As he explained, the stem cells need “room to take root,” and taking a break from nutrition gives her that head start. He also reminded us how hard it is for kids who don’t have that reserve of weight—they face an entirely different list of complications.
I confessed how much I’ve worried about her weight—how different she is from the tiny little girl we brought here seven months ago. Sometimes I slip into denial, wishing time could just stand still. One day cancer will be in the rearview mirror, but by then I won’t have such a little girl anymore, and our little people won’t be so little anymore and my heart isn’t ready for that reality. Ugh that stings. But I’m deeply grateful for the nutrition coaching and support we’ve received, because it has prepared her for this moment. And in the grand scheme of things- it’s unnatural weight and serves for a purpose now and won’t always be this way. I look at that tiny little kids who are nothing but skin and bones that are going through the same thing Avry is- and I will happily take her sweet chubby thunder thighs.
By 11:40, the blood bank team from Dallas had thawed her stem cells and brought them in. Avry was beside herself with all the tubes and stickers they had to place for monitoring. Last time, she was too sick to notice or care. This time she sat up, sipping her hot chocolate with pride, stringing beads for the first little bit. But as the meds took hold, we saw the exhaustion and discomfort set in. She couldn’t rest, though she desperately needed to.
This time her cells were divided into two portions, given thirty minutes apart. The second transplant includes more stem cells—partly because these are less potent, and partly because we collected millions and why not give her extra?! There are still millions more in storage should we, God forbid, ever need them again.
Nikki, our lead nurse, has been doing transplants for nine years. She’s steady, sure, and an absolute wealth of information. We are so thankful she’s part of our team.
At 12:25 p.m., Avry’s second transplant was complete.
For the first four hours, vitals were checked every 15 minutes. By 6 p.m., things had finally quieted down, with fewer people in and out.
Jason, the nurse practitioner, came by and asked how our day went. I told him it went really, really well. He pressed—what went well? My answer was simple: everything. Nothing went wrong. He grinned and said how good it was to hear that-that it’s really important for us as parents to have those days too!
Meanwhile, Avry kept asking about snow—every hour she’d wonder when we could go and where it lives. Her sweet imagination is still very much alive, even in the middle of all this.
The doctors are noticing more clearly now how much her hearing has taken a hit, as well as her short-term memory. Rashes are starting to appear post-chemo, and we’re doing everything we can to keep her comfortable. Dr. Mian reminded us that days 12–14 post-transplant are when the internal organs typically take a hit—that’s when they expect her to dip the most. He said it’s normal for this first week to feel like “smooth sailing.”
The past two months it’s been easy to think, we’ve got this, we’re winning in the big picture in spite of all the hard little details.
But in the past two weeks, death has felt close on every side. Two of our little friends from our support group getting their angel wings last week. One of our dear friends here was suddenly intubated and has been in ICU for a week. It’s a stark reminder of how aggressive this disease is. Things can change in an instant—an infection, organ failure, or an unforeseen complication—and treatment can no longer continue.
So while it’s easy for you to “move on” or forget the seriousness, I want to remind - hey we’re still fighting this aggressive monster! We are still in the thick of it. Still on the front lines. Just because we carry it well doesn’t mean it isn’t heavy and isolating. For those of you who have stayed with us, 29 weeks later—you are the friends tearing a hole in the roof and carrying us to Jesus and we need you and we are forever grateful for you!
Tonight, as we cleaned up the room, changed linens, and re-sanitized, I was reminded of the intensity of those first days of post chemo cleanups. . Back then, it felt impossible to keep up with contamination control. There were moments Crys and I just looked at each other and thought—how?? But we’ve come so far. Now it feels like a challenge we’ve embraced. There’s no one else I’d rather be cleaning up body fluids with. Avry notices, too—she often cheers, “Teamwork!” and celebrates with a high five when she gets to take part. Jake says we’re a well-oiled machine. Avry calls us “the dream team.”
I wouldn’t wish this journey on anyone. And yet, we’ve found a way to find joy in the middle of it. Today, one of the nurses shook her head and said, “How can you have this kind of attitude when you’re going through something so massive? Even as a woman of faith, I’ve never seen this in all my years.”
And that’s the testimony right there: the grace of God, holding us steady in the middle of the storm.
Did you know that the word “attitude” on an airplane ✈️ is the most important instrument? I thought ALTITUDE was until Dr Paul taught this.
See, ATTITUDE in an airplane tells you the position of the aircraft. Whether it’s pointing up or pointing down. It’s the most important instrument in the entire thing because if you are in a free fall, the first thing you should do is check your ATTITUDE instrument.
Your emotions aren’t the same as your attitude—but your attitude will always reveal the direction you’re going. Nose down? You’re headed straight into the hard ground. Nose up? You’re climbing into open skies.
And I’ve lived both. I’ve lived nose down—discouraged, defeated, just surviving. We are due from time to time because it’s the human experience. And I’ve lived nose up—eyes lifted, choosing faith, trusting that God’s promises are higher than what I can see in front of me.
Feelings shift every single day. But when we fix our attitude/choose choose position —when we fix our eyes on Jesus and focus on what He is doing for us -it changes our entire direction. 🕊️
-Our story for God’s glory
PS. In the very first month of diagnosis, we were faced with a hospital bill of over one million dollars. Even after negotiations, part of it still sits in collections. We’ve accepted that hospital bills will be part of our story for years to come, and that doesn’t weigh us down.
What matters most right now is making sure Avry’s immediate needs are covered—especially the things insurance does not—and preparing for the upcoming expenses of radiation. Every bit of encouragement, prayer, and provision along the way has lifted a weight we could not carry alone.
Please commit this to prayer with us—that God would open the right doors and that every need would be met in His perfect timing. 🕊️
Praise Report 🙌
• For the honor and privilege of being Avry’s parents.
• For the safe transport of stem cells from Dallas.
• For healthy, viable stem cells prepared exactly on time.
• For Avry’s stamina and strength today.
• For her radiant smile, even in the middle of tears and fears.
• For steady hands guiding every nurse, doctor, and technician.
• For a hospital team that is alert, compassionate, and attentive.
• For no serious side effects or reactions during transplant.
• For peace, calm, and the presence of God filling Room 386.
• For the faithful warriors who have stood with us all along this journey.
• For the mental, emotional, physical, and spiritual support covering our family.
• For Dell Children’s Hospital—and the privilege of being treated with such dignity and care.
• For the healing work God is doing, step by step, day by day. ❤️🩹
• For meeting every single one of our needs and for the unshakable promise that You will never leave us or forsake us. 🙏
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