August 6 – Happy 4th Birthday, Avry Jo!
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August 6 – Happy 4th Birthday, Avry Jo!
Wednesday, day 3 high dose chemo/ day minus 5 pre transplant
This morning started out slow and sleepy. The 4 o’clock bath had us all struggling to fall back asleep afterward. Avry was not impressed with the 10 PM one—or the 4 AM one! We had to wake her up for both 😰 but by the end of it, she’s usually chattering again.
Jake and I have such a good system now. We’ve become super efficient at it, and it really is—for the most part—pretty seamless. He’s taken over the shower part with Avry, and I prep the room. That just works better with my lame foot.
As Avry’s skin gets more sensitive, the showers are becoming more painful. It’s absolutely heartbreaking to hear her whimpers. I cannot imagine doing this alone. I am so grateful to all of you who helped make it possible for Jake to be here by my side!
After each bath, we redress her port area with gauze, wrapping it around her little chest like a tiny tank top T-shirt. It’s nice and soft and has been working so well. But we’ve had to change the cleaner we use to sterilize the site—her skin is already starting to break down. Poor thing just screams in agony. We can’t even imagine the sensations from the hypersensitivity. It’s awful. And now, she knows—when the nurses walk in wearing their protective gear… it’s bath time. She dreads the port site cleaning with all her heart. Her anxiety soars.
Kelsey was our nurse today. She’s often the charge nurse and hasn’t ever been assigned to us before. She’s experienced and steady, quiet and confident. She was so thorough and calm. We were really impressed.
The nurses came and put up a happy birthday banner on Avry’s door, and Janessa came by to let her customize matching Kendra Scott mommy-and-me bracelets. 💕 Avry wanted to make a card for Nurse Robyn, who hurt her leg—she was so worried and asked if Robyn had to take yucky medicine by mouth. Then we made another scrapbook page for Odessa. Every day we exchange the book with Avry’s service dog and take turns writing in it! 💛
Brooke came by to show us pictures from her Africa trip, and she asked Jake and Avry to sing their song together—and Avry obliged! It was the sweetest thing.
But by mid-morning, I could tell Avry was declining. Her face looked pained. She was sleepy. She said her mouth hurt, so the NP came and confirmed—she’s starting to get mucositis. This is earlier than expected—they didn’t think it would hit until Friday. She had it during Round 3 and it was miserable.
Mucositis is a painful inflammation or ulceration of the mucous membranes lining the GI tract—caused by chemo. The worst part is, Avry’s body is being completely stripped of her immune system and lacks the necessary ingredients to self-heal. So it’ll be weeks before her counts come back and she can start healing again.
We started her on pain meds and tried the numbing mouthwash… but it made her vomit. Which is even more painful with mucositis. She was just exhausted and felt yucky.
At lunchtime, Kelsey brought the nurses in with special cupcakes she ordered from the café for Avry’s birthday. She sat up and smiled so big! Jake ran to the gift shop and came back with two balloons. After everyone left the room, she snuggled down with her eyes half closed and said,
“Daddy… this is the best birthday ever.”
💔
She hasn’t had an appetite all day. She didn’t try the cupcakes or eat anything at all. She’s just getting fluids through her Broviac port.
Jake officially did 17 loads of laundry since Monday! I’m so, so grateful for his presence here. Neither of us can imagine doing this alone.
We all took naps today. When we woke up, it was nearly shift change. Avry was in pain and just wanted us to stay close. She didn’t say much. She barely moved.
So far, we’ve gotten 87 birthday messages (not even including family)! I let her listen to a few videos and messages—and she just lay there. Not a word. Just silent tears rolling down her cheeks. 💔💔💔
She couldn’t wait to talk to Trace. She misses him so much. She keeps saying she wants him here to make silly faces—the kind that make her laugh.
But tonight…
Tonight was awful.
The mucositis is causing so much phlegm and mucus that she can’t swallow. She spits constantly. Her mouth is sore and it hurts to open it. And remember—she doesn’t have her feeding tube anymore. So there are a few meds she has to take by mouth. The most important one? The one that protects her liver from chemo damage.
She panics. She can’t swallow. She’s absolutely terrified.
She tries… and vomits it all up.
We wait 20 minutes. Try again.
This time, Jake and I are holding her down while the nurse tries to get it in. She’s shaking, screaming, hysterical. And we still can’t get it all in.
She is absolutely traumatized.
Jake is helping Avry, and I look at our nurse Emily and say—
“Can I go scream in the hallway?”
And I meant it.
I ran into the hallway and SCREAMED. I couldn’t hold it in any longer. The nurses came rushing out—and honestly, I don’t even care.
I am so angry.
Not just sad. Not just tired.
Furious.
It’s 2025. How is it possible that this is still the only option?
Holding my baby down…
Watching her gag and vomit while we force medications she physically cannot swallow.
Doing it over and over again because her liver needs protection—and yet the very mucositis caused by this treatment is making it impossible for her to tolerate it.
She is suffering. And we’re told, “This is all we have.”
There has to be better.
There has to be a way to formulate this to go through her Broviac catheter. Why wasnt a G tube placed??
Why hasn’t this been figured out? Why are we still stuck in methods that brutalize children in the name of saving them?
I’m not asking for miracles. I’m asking for humanity.
For solutions that don’t require torture.
I am beyond done with watching her suffer like this.
And if you’re not outraged, then you’re not paying attention.
I wrote to the Social worker immediately.
What makes all of this even harder is knowing that tomorrow, the lead doctor will say nothing.
What makes all of this even harder is knowing that tomorrow, the lead doctor will say nothing.
He’ll minimize it.
Excuse it.
Act like we’re overreacting.
Like this is just part of the deal.
Like other kids go through this every day, so we should just accept it as normal.
(Maybe they do. But that doesn’t make it humane.)
I told Jake—I cannot sit through that meeting.
Not again.
Not with someone who either can’t fully comprehend what we’re saying
…or simply doesn’t care to.
Not with someone whose ego is more intact than his empathy.
Who seems to forget these are children—not lab rats.
That our daughter is a little girl—not a statistic.
I’ve sat through too many meetings where our questions were dodged on purpose—not out of confusion, but to justify himself.
Then we’re spoken to like we’re 8-year-olds being introduced to basic human anatomy, instead of two fully competent, attentive parents advocating for our child.
Just like when we clearly requested sedatives not be used—and found out later that he’d ordered them anyway.
And when we brought it up, he brushed it off as a “misunderstanding.”
But he was the one not understanding.
We let it go—but made it crystal clear moving forward: those meds are discontinued.
He’s not even in the room more than 10 minutes a day.
He’s not the one hands-on, caring for her.
So why is he so hell-bent on her taking a psychotic drug—when after a week of me advocating upside down, psychology and psychiatry both agreed it wasn’t in her best interest?
Why is he still circling back, trying to make it happen?
Why does it feel like we’re fighting not just cancer… but the very system that’s supposed to help us?
I am angry.
I am tired.
I am so over this.
Jesus, keep me soft.
Please.
Please.
And I know—it’s not the whole system.
There are so many good ones.
So many nurses and providers who see her.
Who care deeply.
Who go above and beyond.
But right now… we’re stuck.
We’re stuck with this doctor for the next 3 months.
I saw the signs. Jake
Has his thoughts…
I saw the signs. Jake
Has his thoughts…
Right after we signed the first transplant papers… something in me hesitated.
But I ignored it.
I wanted to believe he wasn’t like that.
I wanted to believe he did care.
That he wasn’t another ego-driven academic who saw his patients as research numbers and protocol boxes.
That he wasn’t another ego-driven academic who saw his patients as research numbers and protocol boxes.
I wanted to believe the best.
And now—here we are.
Tonight, Trace and Avry FaceTimed each other… and my heart could barely hold it.
Tonight, Trace and Avry FaceTimed each other… and my heart could barely hold it.
Thank You, God, for these precious souls. I love them more than ever before.
And tonight, Jake looked at me and said,
“You’re in the forefront of hospital life all the time—let me take your place.”
That… is everything.
I am so incredibly thankful for those of you who have helped make it possible for him to be here during the toughest stretch of this battle. His presence is such a gift.
We have five more baths to go.
One day at a time. Moment by moment.
Four years ago Avry Jo -You made me a girl mom. It is the deepest honor of my life to be your safe place. To be the one you reach for in the dark. You are light and love. The way you smile and laugh—even through tears—takes my breath away. You are heart-stoppingly precious when you ask for something so sweetly, your little voice saying please…or when you find joy—even here—in the middle of the sorrow and pain. You are an angel sent to earth to teach us. To slow us down. To wake us up. To remind us what truly matters. The way you smile and laugh even through tears…It undoes me. You show me what true courage looks like. You teach me every day that joy and sorrow can live in the same breath. That we don’t have to wait for the pain to pass to find beauty. You are the proof. You are strong. You are radiant.And I will never stop being in awe of you, sweet girl. 💛#AvrysArmy #MyWhy #MamaToWarrior #PediatricCancer #SafeInMyArms #JoyInTheHard #AngelOnEarth #SacredBond #HoldingOnTogether #ChildhoodCancerAwareness #FaithInTheFire #YouAreMyHeart
Four years ago Avry Jo -You made me a girl mom. It is the deepest honor of my life to be your safe place. To be the one you reach for in the dark. You are light and love. The way you smile and laugh—even through tears—takes my breath away. You are heart-stoppingly precious when you ask for something so sweetly, your little voice saying please…or when you find joy—even here—in the middle of the sorrow and pain. You are an angel sent to earth to teach us. To slow us down. To wake us up. To remind us what truly matters. The way you smile and laugh even through tears…It undoes me. You show me what true courage looks like. You teach me every day that joy and sorrow can live in the same breath. That we don’t have to wait for the pain to pass to find beauty. You are the proof. You are strong. You are radiant.And I will never stop being in awe of you, sweet girl. 💛#AvrysArmy #MyWhy #MamaToWarrior #PediatricCancer #SafeInMyArms #JoyInTheHard #AngelOnEarth #SacredBond #HoldingOnTogether #ChildhoodCancerAwareness #FaithInTheFire #YouAreMyHeart
Comments
Jewel Nolt
Judy King
You are being so strong. I know your strength comes from the Lord. I pray that He will continue to support you in ways that you are positive come from Him. I pray for Jake l know his heart breaks, too, when he sees what's happening to his little girl. I'm so glad the two of you can be together during this time. And I pray for Trace. I imagine he misses being a family more than Avry does. I pray that God gives him understanding far beyond his years to understand why things are having to happen the way they are.
Suffice it to say, l am praying vigilantly for all of you.
Roxanne Kurtz
Emma Borntreger
Cindy Hanus
Not even knowing her and you, my heart is breaking. It’s hard to even read, much less live your day to day with this horrible disease and watching your child suffer. All I can do is keep you all in my prayers🙏🏻😢
Alissa Burkholder
Cindy Swartzentruber
Denise Unruh
Gena Martin
Chantal.beaton
Anna Dougherty
Emily Koehn
Emily Koehn