Sunday August 10 —pre Transplant day
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#miraclesforAvryJo
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Sunday, August 10
Saturday, Avry received her last dose of chemo for this preconditioning before transplant. I thought she was only receiving five days, but it turned out to be six. She continued to vomit, and by morning the rash we’d been watching disappeared. By evening, her little back was bright red, hot to the touch—almost like a sunburn—and she was itchy from head to toe.
One of the most important parts of this process is mouth care. Four times a day I swab her mouth with saline. The first two days of the week she happily obliged, but as her mouth became more tender and the sores multiplied, it’s turned into a fight. The risk for infection is so high, especially when she’s vomiting with open sores. They’ve offered red light therapy to lower the inflammation, but she won’t open her mouth now, so I’ve only been able to use it gently on her cheeks from the outside—something she doesn’t even want touching her right now.
It’s shocking to think how fast we’ve taken her from over 9,000 WBC to zero. Normally it takes 8-10 days, but this week’s chemo brought her counts down in days. Just a week ago she was running around, laughing, and eating everything in sight. A week ago she was bored in her room, wanting to go home and wander the hospital halls. How is that only a week ago?
Last Sunday, I woke up slow and slipped out to the back porch swing for an hour. You don’t realize the luxuries of your own home, coffee, and space until you don’t get to enjoy them. Jake and I both woke up with dread that morning. The past few days had been spent making her wishes come true—her number one being at home, all together as a family. She really wanted to go bowling, so Jake took her, knowing she’d probably only last a few strikes. Even when something only lasts a few minutes,her JOY is worth it. We spent hours in the pool, went to the Bodego, she rode applesauce (Traces old pony)
and took golf cart rides; the kids strapped into the backseat singing to Jake’s playlist of their favorite songs. I don’t think there’s anything I love more than riding that silly orange golf cart through the woods listening to the children sing.
For many years, connecting as a family looked like trips to the beach or drives in the Jeep. In this chapter, moments to truly reset as a family have been hard to find. I’m not talking about anything extravagant, but when family meals and bedtimes barely exist, this mama needs something to hold onto—some reminder that even when nothing feels stable or promised, somehow that we just might be all right.
That Sunday morning, the heaviness of what lay ahead pressed in. Trace knew what day it was, and we told Avry too—she could tell something was off. We dried our tears and committed together to fight hard all over again. Nothing more I wanted than to make our family’s favorite pancakes with homemade syrup—Trace boiling the syrup, Avry dumping the measuring cups. Jake was finishing the bacon when I whispered to Jake, “One day, we’re going to do this every morning- make our kids breakfast together at home in our own kitchen! Even when they’re grown and married, they’ll come home for homemade pancakes and then we’ll make pancakes for their kids too.” Ahh— hope! It’s a flicker.
Walking into the hospital felt surreal—too much like 21 weeks ago when we were first introduced to the oncology unit. The kids didn’t want to stay in the room; they wanted to run. One of our nurses mentioned later that our entrance wasn’t the normal way our family comes onto the floor. These oncology nurses are so intuitive. They see our pain, even when the smiles fade. They know how to make a difference.
By last evening, (sat) Avry spiked a fever. Her heart rate kept climbing, and even with her PCA (pain pump) increased, she was still in pain, vomiting, and dealing with diarrhea. Her platelets dropped, so she got a blood transfusion. Morgan, our nurse, has spent most of her career with transplant patients at St. Jude’s. She didn’t leave the room until after 3 a.m. Jason, the nurse practitioner, worked with Dr. Cohn, who was on call. The itching from the morphine got so bad they gave her Narcan to reverse the side effects. Normally Tylenol is off-limits during transplant, but when her heart rate hit 210 and her fever climbed, they gave it, along with antibiotics, after running blood cultures.
We don’t yet know if her back will turn into “chemical burns” from chemo or if it’s just one more reaction to everything her body is enduring. Around 3 a.m., she finally fell
Asleep, exhausted, and slept until 7:30. Those hours—trying to keep her comfortable, not knowing how she’d respond-being on high alert…waiting out the storm…
This morning we gave her a bath, changed all the linens, and wiped down the room. We’re supposed to do this twice a day, but Jake even gets on his hands and knees to clean the floor—partly because housekeeping rarely comes in, but also because it’s something we can do and feels good to do something else! The nurses commented on the clean room- pretty sure we’re the first to mop the floors with wipes 😛 but I am so determined to not have a stale stinky sick smelling hospital room!
This morning Dr. Cohn and the nurse practitioner came in- have I said how much I love Dr. Cohn?! She’s so easy-going and calm, and today she was wearing the “Miracles for Avry” shirt Avry gave her yesterday. We had gotten pain meds in early, so Avry actually sat up and worked in her sticker book that Nurse Simone brought her last night. She stayed up for an hour before getting sleepy and vomiting again. The exam went much better today and Avry interacted more with Doc.
Today is a rest day—nothing big, just caring for her and keeping her comfy.
Tomorrow is the big day—Transplant #1. The stem cells arrive today from Dallas, the same ones that caught a private jet to Dallas three months ago after retrieval. Tomorrow, they’ll be given back to her. The transplant itself only takes 15–20 minutes and isn’t the risky part—her body will recognize the cells as her own. The tricky part is the hours after, when her body may react to the solution they’re stored in. Those hours require close, round-the-clock monitoring, and she’ll have a whole team devoted to her.
Tonight Avry has wicked rashes over a lot of her body! The team has been in and out of our room all day. Some think it is a rash that is developing into burns. 🥵 she is so miserable and there’s really nothing that helps. If it’s indeed chemicals burns. All the affected skin will peel and and shed just like a bad Texas sunburn. 🥵 I thought the baths were supposed to help?? It doesn’t make any sense…we were SO thorough and did extra in between. I hope it’s just a reaction to all the things her body is going through and not chemical burns!!!!
For those who have just joined and are asking the purpose of the transplant:
This is a stem cell/bone marrow transplant for stage four, high-risk neuroblastoma.
Neuroblastoma is a type of childhood cancer that occurs from solid tumor that begins in early nerve cells called neuroblasts (when there is abnormal growth or when they divide) and can affect multiple organs. Unlike ALL (leukemia) neuroblastoma has lower survival rates and can be more resistant to treatments. One of the reasons this cancer is so hard to treat is because it changes rapidly. Cancer cells mutate their DNA more readily than healthy cells while also changing to survive and grow uncontrolled. These rapid changes are one of the reasons cancer is so difficult to treat. Even when treated with a single drug, some cancer cells may already have or can develop mutations that enable them to resist therapy. After treatment, only those resistant cells remain and remake a tumor that is even harder to treat than before.
Three months ago, we collected her stem cells as soon as her Curie score allowed. After five rounds of induction (chemo and immunotherapy,) her Curie score dropped to 0—meaning scans can no longer detect cancer cells.
But here’s the reality:
From past cases, if we stopped treatment now—even with a Curie score of 0—she would likely relapse within days or weeks. And relapses in high-risk neuroblastoma are almost never cured. This is why we push forward with the harshest treatment possible.
Why high-dose chemotherapy?
• Its job is to destroy every possible cancer cell left in her body.
• It also completely wipes out her bone marrow—the factory that produces blood cells.
Without replacing the marrow, this chemo would be fatal.
Why the transplant?
Before starting high-dose chemo, we collected her own healthy stem cells. After chemo, we infuse them back into her body so her bone marrow can recover and make new, healthy blood cells.
It’s not just one transplant—we do this twice to give her the very best chance of survival against this aggressive my
Mutating disease.
This is our shot NOW at curing a cancer that doesn’t give second chances.
A single cancer cell is like a copy machine stuck on overdrive—but instead of making helpful copies, it makes bad ones.
If even one cancer cell is left in the body, it can quickly make millions more. Those new cells make more cancer cells, and soon it spreads everywhere again.
That’s why high-risk neuroblastoma is so dangerous—these cells grow fast, and they don’t stop.
To have the best chance of wiping out every single one, we have to go as deep and hard as possible and keep on for a long time to ensure annihilation.
• 10 rounds of chemo and immunotherapy to shrink and kill as many cells as possible.
• Two stem cell transplants with high-dose chemo to destroy anything left.
•Radiation
It’s not just hard treatment—it’s treatment at the very edge of what the body can survive. Because with this cancer, if you leave even a single cell behind, it can take over again.
Hopefully this helps explain just a little more of what’s really going on.
This is such a massive battle. We have one job: take the next step. I can give you all the facts, I can recount every horror—but even then, it’s hard to fully comprehend what’s at hand. Part of us is still in shock. The part that isn’t has gone into survival mode—robotic, with sudden jolts of reality that hit hard when we least expect it. It’s exhausting. It’s heartbreaking.
We are present enough to cheer her on and meet every need the best we can. Outside of that, we fall short in almost everything else. Our faith is still here—deep-rooted and strong—sometimes more mustard seed sized. And there are times I wonder ‘where is it? Have we lost it?’ But the foundation is solid and it’s not going anywhere. There are things our eyes have been opened to thro this experience that we can’t unsee, and we’ve tucked those away for another season… a season that isn’t about life-saving battles.
No matter what, even if, we will continue to walk this road with honor—right alongside our Avry Jo.
We don’t have all the answers. We aren’t the experts. There are moments full of questions with no resolution. Some days, grace and your prayers are the only things that hold us up. Other days are marked by silence, isolation, and grief.
But every single day—every day—there are a million little miracles, if you have the courage to look for them.
The Weaving
My life is but a weaving
Between my God and me.
I cannot choose the colors
He weaveth steadily.
Between my God and me.
I cannot choose the colors
He weaveth steadily.
Oft’ times He weaveth sorrow;
And I in foolish pride
Forget He sees the upper
And I the underside.
And I in foolish pride
Forget He sees the upper
And I the underside.
Not ’til the loom is silent
And the shuttles cease to fly
Will God unroll the canvas
And reveal the reason why.
And the shuttles cease to fly
Will God unroll the canvas
And reveal the reason why.
The dark threads are as needful
In the weaver’s skillful hand
As the threads of gold and silver
In the pattern He has planned
In the weaver’s skillful hand
As the threads of gold and silver
In the pattern He has planned
He knows, He loves, He cares;
Nothing this truth can dim.
He gives the very best to those
Who leave the choice to Him.
Nothing this truth can dim.
He gives the very best to those
Who leave the choice to Him.
-Corrie Ten Boom
Rose for the Schapansky’s
Ps. If you wear your #miraclesforAvryJo shirt tomorrow in support of our rainbow warrior, please tag us on social! We appreciate your support! 🎗️🌈💖
Comments
Angela Angela
Keep fighting brave girl. You are so strong and beautiful! Hugs from many states away 😭🙏🏼
Donna Rutt
Carmen Swarey
Sharon Nissley
Nancy Pedersen
Debbie Linthicum
Robyn Zampier
Irishlife04
Cammie Clark
Sending you love and hugs Rose. From one momma to another my heart is with you, holding on to hope, praying for you all. Xoxo.