July 29, Monday
In support of
#miraclesforAvryJo
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#miraclesforAvryJo
Curie score update
Friday, July 25 – Continued
Friday, July 25 – Continued
The morning dragged as I kept refreshing the messages, anxious for any updates. Avry was under anesthesia for quite a few hours—she had several tests and scans back to back—The doctors sent updates about every hour, and each one helped keep my heart steady, but it didn’t take away the weight of the waiting.
I sat outside in the little courtyard just off the surgery waiting room. Normally, I walk laps to pass the time—but today, obviously, I wasn’t walking anywhere. I was so grateful for this boot, though, because it still allows me to move around. So there I was, foot propped up in the same room we waited in after Avry’s very first OR trip back in March. It felt surreal to be back in that exact space. Jake and I don’t usually stay in the waiting room—we usually grab coffee or lunch and spend time outside.
March 10 I remember we sat in this very place that day, completely unaware of how much our life was about to change. I remember when she woke up that first time and wouldn’t let go of us. I think about how many times we’ve walked this hallway since then. How many times we’ve handed her over and sat in the stillness… I remember the first MRI when the separation alone felt like it would suffocate me. I had no idea this would become our new norm.
And then—my heart stopped for a second—because I saw Dr. Cohn walking straight toward me. Fast. Her pen went flying from her pace and she didn’t even stop to grab it- and she had two other people with her. My mind instantly twisted in ten directions at once, and I was back in that moment, 20 weeks ago, when we met her for the first time. When she and a team of doctors came into the room, introduced themselves as oncologists, and said they had some very serious things to discuss. I’ll never forgot how my brain refused to believe that an oncologist was here to talk about our little girl.
Time slowed down. Dr. Cohn sat next to me, her mouth moving, but for a second—no sound registered. My heart braced for impact. I was trying so hard to read her face—but I couldn’t. Then suddenly, I heard the words that cut through the fog:
“Her Curie score is zero.”
I just stared at her.
Zero.
ZERO.
“Zero?? It’s really zero???”
Dr. Cohn and I just grabbed each other—overtaken by emotion. Tears of relief spilling over, melting months of apprehension and fear. I couldn’t believe it. I didn’t expect it—not after the lymph node uncertainty or round five chemo being halved. And yet, she said it:
“Dr. Naditch did it. She got all the tumor.”
We stood there, stunned and emotional. Dr. Cohn explained that Dr. Mitchell had tried to find me earlier, but I was outside. So she jumped at the opportunity to come tell me herself. And truly—there’s no one else I would’ve rather heard it from. I didn’t even realize how much this had been weighing on me until that moment. I just sat there, staring. Letting it sink in.
I FaceTimed Jake immediately. He rushed out of the noisy area he was working in and answered, worried—“What is it??”
I could barely get the words out… “It’s zero! Dr. Cohn just told me—it’s ZERO.”
I don’t think I’ve seen that smile or that twinkle in his eyes since March 9.
I sat there another 15 minutes, letting it wash over me. After all these hard, awful, torturous months… it was working!!!There is no visible cancer in her body.
I thought back to the glimpse I stole of her MRI screen on Thursday—how three months ago it was full of glowing green specs. And now? Nothing. I remembered those first few days and the hundreds of rapid-fire decisions we had to make. One of the hardest was whether to treat here or go somewhere else. We spent hours with Dr. Cohn and Dr. Wells, researching, listening, trusting our instincts. In the end, we chose to stay and do the harshest, more Unconventional but successful treatment plan. But we had peace. These doctors were calm, confident, and they saw us. They treated Avry like their own.
And now—zero. Maybe, just maybe… we can exhale today.
At 1:00, I got the message: “Your loved one is waiting in the PACU.”
I hobbled back as fast as my boot would allow, heart racing. I just wanted to hug that little girl! When I walked into the bay, Avry was crying, disoriented, in pain. A few minutes later, she was flailing, pulling out her oxygen, completely inconsolable. The nurse barely glanced up—more focused on her computer than Avry’s screaming vitals. I kept questioning what had already been given to her. Finally, I scooped her up and held her tight. She fought me, panicked and confused. I held her firmly, whispering—almost yelling—“It’s Mom. I’m here.” And slowly, she relaxed… her body melted into mine… the monitors stopped screaming.
She fell asleep in my arms. I held her for over an hour.
Eventually, the nurse told me she couldn’t give any more pain meds because the computer had already marked us as discharged. After a frustrating delay, we finally got the meds and Her vitals stayed stable so we were moved out of critical care and into another bay and soon we were cleared to go home.
When Avry woke up again, she didn’t remember the first time. She sat up and asked to go back to 3East. When I told her we were going home instead, she looked disappointed.
Right then, three nurses came busting into the room. They were loud and demanded to check her dressing. Avry crossed her arms across her little chest looked them straight in the eye and said,
“No! You’re in my bubble!”
They froze—then laughed. “We’ve never heard that before!” And backed up really fast!
I was so proud of her!! (She remembered Jake teaching the children about respecting others personal space and boundaries) and even in a fog, she remembered. I helped unbutton her jammies to show them her double-lumen Broviac, which they didn’t seem familiar with. I later learned this type is less common—mostly used for long-term chemo in neuroblastoma kids.
Esther came to pick us up, and we packed our bags. Avry was doing so well and couldn’t wait to be outside again.
That night, Jake and Trace came home and we spent time riding the golf cart and snuggling on the couch.
Jake took one look at my foot and said, “That’s more than a sprain…”
Avry was up quite a bit through the night with pain—which was to be expected. I couldn’t sleep anyway with my throbbing foot so I decided to go get my foot checked out first thing Saturday morning.
Saturday, July 26
Avry woke up in more pain than the day before. Her color wasn’t good, and it was hard to move her without hurting her. Meanwhile, my foot was still swollen and colorful—definitely not improving like a typical sprain.
X-rays confirmed it: a non-displaced fracture about an inch long. The ER doctor said no surgery is needed, but I’d need to stay off of it, keep it wrapped, wear the boot for six weeks, and follow up with ortho.
I nodded, smiled, and suppressed the urge to laugh.
I told him: “We’re about to walk into transplant with my daughter. I’ll do my best—but staying off of it and physical therapy? Not likely.”
Still, I’m glad I went. It gave me clarity—and confirmed what I knew in my gut. This wasn’t a typical injury. It’s a broken foot, and I’m walking into the most intense stretch of this journey—in a boot.
This weekend, I keep wondering—How is this going to work? I could barely take care of myself much less of care that Avry requires! But one step at a time, we’ll figure it out.
Because somehow… even with a fractured foot and a fragile little girl…
We got to hear the word: ZERO.
And today, that’s everything.
This weekend has been filled with both relief and reflection as we try to fully process the news—zero.
Not cured. But zero.
Both Dr. Wells and Dr. Cohn left voicemails on my phone. I think they knew—we needed to hear it again. To replay it. To let it soak in.
After Dr. Cohn told me the news in person, I asked, “So… do we really have to go through transplants now??”
Of course, I knew the answer.
She smiled gently and said, “Yes. We need to keep her this healthy.”
Because here’s the truth:
A Curie score of zero doesn’t mean she’s cured.
It means there’s no visible cancer on the scan. It means the treatment—chemo, surgery, immunotherapy—has reduced the tumor and cancer burden to a level that cannot be detected on the mIBG scan. But there can still be microscopic cells hiding in her body… cancer cells too small to light up or show on imaging. That’swhy we continue treatment. That’s why transplant is next. Because this is the fastest growing cancer and those microscopic cells can mean disaster in a matter of days if they’re not continually targeted.
Because zero means we actually have a real shot at beating this.
And the data confirms it—children who reach a Curie score of zero at this point in therapy, especially before transplant, tend to have significantly better long-term outcomes than those with any residual cancer showing.
So no—this doesn’t mean the journey is over.
But it does mean the treatment is working.
And that gives us hope that maybe, just maybe… these next mountains we’re about to climb will be the ones that brings us completely to the other side.
It’s a packed, busy week ahead with appointments and transplant prep. Please continue to pray for strength, endurance, and peace as we step into this next chapter.
Thank you for believing with us for these miracles.
Thank you for fighting with us on your knees. Thank you for your encouraging messages and assured thoughts and prayers!
We give God all the glory for this answered prayer—
for a treatment plan that’s not only been effective, but miraculouslyso.
We are walking forward with hearts full of gratitude, knowing He is in every detail.
This week is so heavy with transplant prep.
But today—we got a bit of good news: Avry got her dental clearance with no cavities! 🙌🏼 Thank you, Jesus!!
The mouth complications that come with transplant are no small thing. They’re painful, long-lasting, and just one of the many hurdles we’re bracing for.
As we prepare, we’re specifically asking for protection over her internal organs throughout this process. The two biggest concerns are infection and organ failure—and we’re placing both in God’s hands.
Please, Jesus… just take the wheel.
We’re holding deep gratitude for how far she’s come and the incredible progress she’s made—and we’re clinging faith
Even though sometimes it’s mustard seed sized- for the road ahead. Trusting God to carry us through this next chapter, just like He’s done every step so far.
Comments
Twila Beachy
Shelleylthornton
Anna Dougherty
Darla Leid
I also pray miraculous healing over your foot in Jesus name. So that you can walk into transplant healed and whole to support your precious Avry!
Lord, we Praise You for this incredible news of zero and thank you for the way you have carried this family on this journey. We thank You in advance for the good things that are still coming to them. In Jesus name. Amen!
Sharon Nissley
Sheryl Butcher
Veronica Ward
Valerie Lapp
Janelle Burkholder
Melisa Yoder
Angela Angela
Phil Neuenschwander
Twila Beachy
Martha Seitz
Now for the next steps. I will pray that Avry and her family are full of courage. I will pray for no infections. I will pray for God to cover you through these next challenges. Love to all of Avry and her family
Martha Seitz
Now for the next steps. I will pray that Avry and her family are full of courage. I will pray for no infections. I will pray for God to cover you through these next challenges. Love to all of Avry and her family
Marsha Farrar
Alissa Burkholder
Cassie Becker
Cindy Swartzentruber
Diana Lubbers
Martha Neuenschwander
Martha Neuenschwander
Coleen Barnhart
Nancy Pedersen
Pamela Cross
With much love from Illinois,
The Cross Family
Ruth Zehr
Renee Hurley
John Neuenschwander