July 7-Round 5, Day 1
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#miraclesforAvryJo
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#miraclesforAvryJo
July 7-Round 5, Day 1
Monday
We woke up early this morning because we soaked up every last minute as a family last night—playing games, going to the park, just being together.
Monday
We woke up early this morning because we soaked up every last minute as a family last night—playing games, going to the park, just being together.
So this morning, we finished the packing.
Leaving our beds for the hospital is never easy.
Avry woke up and, wondered, “Why are we up? It’s still dark!”
Jake told her while I was in the shower.
And then I heard it—
A loud, heart-wrenching “NOOOOO!”
I knew.
She was so sad to go back.
Sad to leave the comfort of home, of freedom, of normal.
But that moment didn’t last long.
She got up, ran straight to her closet, and picked out a dress.
It wasn’t practical for accessing her tubies—but I didn’t care.
Whatever makes her smile today… that’s what matters.
We left and she was so happy the whole way to the hospital—singing, chattering, full of light.
It’s hard for her to hear us on the road now… but that didn’t stop her joy. “I can’t very hear your voice anymore” is often her sad response.
We arrived and went straight to 3 East.
It was such a smooth morning.
She walked into her room and right onto the scale—something she’s never done before.
There was the usual pre-meds and prep for the OR.
By 8:30, we were headed to pre-op.
Meeting doctors.
Signing consents.
I suited up in my bunny suit…
and we got ready to walk her into another round of bravery.
Saying goodbye to Daddy wasn’t easy.
She clung tight and cried.
And walking into the OR —
She hates it. The bright lights, the cold room, the anxiety in the air. But I was with her. I held her while they put her to sleep.
(This is not the norm — usually, parents don’t accompany their child into the OR.
But after countless conversations and her complete lack of response to any pre-sedation meds, they’ve made an exception for us. It’s the only way.)
The anesthesiologist was older, unpolished — but on it.
Direct, focused, personally invested.
Once she was in the OR, Jake and I returned to the room and got everything set up.
We had breakfast and waited.
Meg brought Trace up, and we got to hang out as a family for a little bit before the audiologist came in.
She came in to discuss the results of Avry’s brain stem hearing test.
She confirmed the hearing loss.
And then she let us hear it.
She played a simulation so we could understand what Avry’s hearing ability is like with the percentage she’s lost.
There are no words.
It broke us. 💔
It explains so much.
They don’t usually address hearing aids or intervention until the endof treatment, because the loss typically continues with each round of chemo.
But they’re not used to seeing this much loss this early.
This level of loss is normally seen at the very end — and we’re still on the beginning end!!!!
It’s unsettling.
It raises a thousand questions.
What does this mean?
Can we decrease the chemo dosage without risking effectiveness?
Will we still be able to achieve the Curie score we need before transplant?
Do we trust the protocol? Can we?
They took ear impressions while she was sedated this morning, and they’re moving quickly to get her hearing assistance.
Life-saving measures will always come first — but with this much hearing loss, not doing anything would significantly delay her development.
They are not willing to let that happen. For this, we’re grateful!!
Right after the hearing test in the OR, they administered the immunotherapy infusion.
She woke up from that infusion-
Her blood pressure was really low so a They kept her in PACU and monitored her until she was stable enough to return to her room.
And then — the storm hit.
Swelling.
Rashes everywhere.
She was miserable. Crying. Frustrated. In pain. She couldn’t hear anything, and that only made it worse.
We tried every med. The NP stayed in our room, working through every option.
Back in the hell storm.😭
Later, Dr. Wells came in to discuss the plan for this round of chemo.
Jake asked
“Would you feel comfortable cutting back on chemo if this was your little girl?”
“How do we know this is going to work?”
“Should we try a different chemo instead of decreasing the Cisplatin dose?”
He consulted with the team and returned with this:
“We need to trust the protocol.”
This isn’t the outcome any of us saw coming.
The hearing loss — this substantial, this soon — is rare.
It’s not something they’ve had to manage in this way before.
But the pioneering hospital that developed this treatment plan and has successfully treated so many neuroblastoma kids-
They’ve seen this.
They’ve made this recommendation.
So…
Do we trust the protocol?
Hmm🤔
Do we trust God?
Where are You, God???
There really aren’t words for the emotions right now.
There’s very little that makes sense — not today, not in this season.
What I do know is that it hurts.
All of it.
The hearing loss adds a whole new layer of grief.
There’s already so much loss wrapped into this journey.
Being home reminded us just how much she endures.
When hospital life becomes your normal, you forget how brutal it really is.
You keep going because you have to —
One next step after the next.
But when you step away — when you breathe —
You see her again.
We saw her.
The version of Avry that got snuffed out back in March.
The little girl we miss so much.
We caught a glimpse of her.
And it wrecked us all over again.
How much weight can one heart carry?
The ache of watching your child suffer… the heaviness that never fully lifts.
Even in the good moments, there’s a shadow—because you know what’s around the corner.
The joy is real… but so is the fear.
And holding both at once feels like it might break you.
Then add in the out-of-control feeling that touches every aspect of our families life.
Nothing feels steady, nothing feels safe. You’re just bracing for the next wave before you’ve even caught your breath from the last.
I just want to know it’s going to be okay.
That we will be okay.
Were tired of holding broken pieces…
and watching more keep shattering before we have even had the chance to gather the last ones.
There’s no pretty bow to wrap this one up with.
It’s raw.
It’s heavy.
And it hurts in ways I can’t explain.
We’re doing our best to keep showing up, to keep trusting, to keep holding on.
But today?
We’re just in it.
Thank you for walking with us.
For praying when we can’t find the words.
For holding space when we’re too tired to explain. For pure simple kindness.
We need it more than we can say.
Comments
Sharon Nissley
We will keep praying 🙏🏼 We’ve shed tears .. n sent virtual hugs 🫂 May you feel God tonight… sending love 💕
Adriannasage06
Faith Sommers
give thy strength unto thy servant, Show us a token for good. ” We pray Psalm 86 over your family. In this hard time, when darkness comes, may you see HIS light.
Kathleen Carter
Carolyn Schrock
Cindy Hanus
Imagine being the Parents of this beautiful little girl and having to watch her suffering. I admire the faith you keep in God. I can only keep praying that your family will be whole again at the end of this nightmare 🙏🏻🙏🏻🙏🏻
Abby Myer
Shar Eberly
Katie Stoltzfus
Standing in the gap for your beautiful Avery Jo and for all of you! Much Love and Blessing
Karen Mahoney
Mary Troyer
Janetrusso55
[8] You number my wanderings; Put my tears into Your bottle; Are they not in Your
book?
You are all in our prayers and you are in the hands of a loving and faithful God who sees all your heartbreak and pain. You will get through this storm and He will not leave you or forsake you. Your strength comes from Him and you can trust that He hears your prayers. May His love and peace comfort you all each and every moment. We love you.
https://bible.com/bible/114/psa.56.8.NKJV
Serena Amoth
Luckey2travel
Luckey2travel
Dericka Stoltzfus
Nancy Pedersen
Betty Allgyer