Sunday, July 13 admitted
In support of
#miraclesforAvryJo
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#miraclesforAvryJo
Sunday, July 13
We were having such a nice Saturday evening—just sitting around visiting with Linfords. The children were playing, and I was holding Avry. The noise didn’t bother her at all. She was so content in my lap… until she vomited again. Jake and I gave her a bath and got her settled. She fell asleep.
About an hour later, she woke up. Jake and I are sleeping in her room tonight, and she seemed really restless. She felt warm, and I began to wonder if she was working up a fever. I gave her all the meds I could and turned off her feeds for a few hours. I really believe this is delayed post-chemo. Around 2:30, I gave her the rest of her medication and restarted the feeds on very low. Jake and I switched—he had gotten a good start to the night, and I was ready for some rest.
We woke up around 7:30, and I just knew something was off. Her temperature was 100.5. We’re instructed to call the on-call team when it hits 100.4. I thought, “Can’t we just wait until tomorrow’s clinic appointment?” But I knew better. I called, and the nurse practitioner told me to recheck in 20 minutes. It was 101.7. We were told to come in immediately through the ER.
She was so lethargic, she didn’t even fuss about going to the hospital.
In the meantime, I whipped up some pancakes. Anna started frying them along with eggs, and we had sausage leftover from yesterday. (I was probably the only one who really cared about having a non–fast food breakfast!) it was so sweet to see all the little children sitting at the table eating breakfast!
Jake may have been wondering if it was overkill—but then he couldn’t stop complimenting how good it was. I called that a win. :)
We left for the ER, and Avry smiled sweetly before falling asleep right before we arrived. The ER staff was expecting us and immediately placed us in an isolation room.
We hoped it would be a quick visit—labs, fluids, antibiotics—and then home. But her heart rate stayed dangerously high. Labs confirmed she’s already neutropenic. That means her white blood cells are basically gone, so even if she is fighting an infection, it won’t show clearly in the labs. They started antibiotics and continued fluids. When you add infection to neutropenia—it’s nothing to mess with. So they admitted her.
This is Round 5, Day 7. Her counts won’t start to recover until Day 16.
Every round, we try to keep her fever-free through the low counts. But when fever starts early (like today), she usually runs a fever through the entire neutropenic window. That’s what happened the first three rounds. And we know how awful that stretch is.
Jake said,
“Remember riding roller coasters, and you’ve gone around the loop and backward for the seventh time—and you’re just done, ready to get off before you puke or pass out?”
(He used to be a roller coaster junkie—so it tracks.)
And then I said,
“I don’t mind being in the hospital—even for a full 25 days. I can handle it. But when you go home and have to come back less than 24 hours later? That’s the part that makes me want to throw a little hissy fit.”
We had our feelings. Then we made a game plan.
I caught an Uber home while Jake stayed with Avry until they moved her to her room on 3 East. But there had been an accident, and the ride took well over an hour. And somewhere in that backseat, it hit me all over again…
I don’t want to go home and pack up again.
I don’t want to sort through the stuff and figure out what we might need for the next 9–12 days.
I don’t want our family to be separated again.
I don’t want us all to be splintered in different directions.
I’m tired.
I want to sleep in my own bed.
I want my family under the same roof.
I just want our family to stop hurting. 💔💔💔
And then I think of the moms who don’t get to fight anymore.
Who aren’t bone-weary from sleepless nights filled with worrying, soothing, and advocating.
Who would give anything to hold their child again—to smell their little chemical-scented heads… to hold vomit bags… to do the dreaded HCG wipes.
Two weeks ago, two families from our neuroblastoma support group were told the words no parent should ever hear: their children were being moved to hospice.
I cannot begin to fathom that moment—walking out of the hospital, knowing it’s the last time. Knowing you’re stepping into the final chapter.
My heart breaks all over again just thinking about it.
The weight of it…
And so I remind myself:
I get to be exhausted.
I get to pack up for the hospital again.
I get to smell like chemo pee.
It doesn’t make it easier. But it forces me to embrace the heartbreakingly hard.
When I got home, the house was quiet. It was exactly what I needed. Time to gather my thoughts. To breathe. Jake called and told me they were in our room now and to take my time getting back. I had three hours. I got repacked with fresh blankets and all the necessary things. Avry even called me and chatted a bit—she sounded like she had perked up. She was a little sad none of her favorite nurses were working. It’s a skeleton crew on the floor this weekend (Friday, seven kids were discharged).
Anna brought me back in tonight. And again—it was what I needed. Normally when I’m around people, I’d rather just be quiet and in my own head. But silence can be uncomfortable for others, so I find myself being chatty. I often despise light banter when life feels this heavy… but tonight, it was good for me.
Avry is in pain. Everything hurts. She just lays there, curled up next to Jake. Her fever continues. Her heart rate is still high—over 200—which makes it even harder for her to rest.
Please pray with us:
🙏 That her little body would fight fiercely
🙏 That the infection would leave
🙏 That we’d find ways to keep her comfortable
🙏 That her doctors would be wise and vigilant
🙏 That peace and healing would cover her body and spirit
Jake has to return to work this week, so it will be Avry and me in the hospital. Trace has been needing his dad in the worst way, and I’m so thankful they’ll be able to spend the week together. Please pray for them too—for their safety, strength, and that Trace feels secure and deeply loved .
We’re doing all we can. We’re weary. But we’re holding tight to hope.
It’s not easy. It’s not fair. It’s not what anyone would ever choose.
But we’re still in it.
We still get to hold her.
We still get to hope.
And that is everything.
Stage 4 cancer doesn’t stop for Sundays, or weekends, or holidays.
There are no schedules or appointments or neatly organized plans.
It doesn’t care what day it is, what you had on the calendar, or who was counting on you to show up.
In this kind of fight, everything else fades.
Relationships feel strained—not because you don’t care, but because survival takes every ounce of you.
Plans fall apart—not because you’re flaky, but because your world is spinning on a different axis.
You can’t prioritize brunch dates or birthday parties or returning phone calls—not when you’re just trying to keep your child alive.
You’re doing your best to breathe, to function, to care for your family moment by moment.
And sometimes, that means disappearing for a while.
Sometimes, it means saying no to everything and everyone else—because the fight demands your full presence.
It’s not personal.
It’s not rejection.
It’s just reality.
So if you’ve ever wondered why someone in the thick of a life-altering battle pulls away…
It’s not because they don’t love you.
It’s because they’re in the fight of their life—and they’re choosing what matters most in the now: survival, and healing.
And if you’re the one fighting—give yourself permission to let go of the rest.
You don’t owe explanations.
You don’t have to apologize for showing up fully where you’re most needed.
One day, there will be space again.
But for now—this is sacred ground
Thank you for praying us through.
—Rose 💛
Comments
Sharon Nissley
Jill Zundell
colleen hata
Dawna Koehn
Adriannasage06
Martha Seitz
Diana Lubbers
Laura Ferry
Lord be with this family every step of the way and diligently with each doctor and caregiver for complete restoration of this precious girl!
Katie Smith
Betty Allgyer
Teri Mouritsen
Nancy Pedersen