August 21-23 post transplant
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#miraclesforAvryJo
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#miraclesforAvryJo
August 21-23
It was 3 AM when I switched with Jake. X-ray, labs, and everything were finished, and Avry was finally resting peacefully—with her oxygen. I hadn’t slept at all yet, but I was so relieved that Jake was able to get a few good hours in.
Around 3:30, I heard her vomiting. A few nurses were already in the room, and somehow I drifted right back to sleep instead of jumping up. A little later, I woke to the sweetest sound—her chattering away to Simone (her favorite nurse right now) about coloring pages. This morning I asked Jake if I’d dreamed it, or if she really had been talking in full sentences!
By 7:30 we were all awake and started our morning routine. Both of us actually felt rested. Avry sat up and asked for cold ice water. She pulled off her oxygen, and her numbers hovered around 96%—so we left it off. Max, our nurse for the day, walked in, and Avry gave her a piece of her mind about the “dumb oxygen.” Max laughed and left the room dancing, shouting, “She’s back, baby! Our girl is back!!” That’s when you know—when a nurse who’s been with us for six months celebrates Avry bossing her around. Jake and I couldn’t even get a word in. And just like that—she’s back.
The mix of Lasix, oxygen, and more steroids gave her the push she needed. Her neutrophil count/ANC (the white blood cells that fight infection) jumped from 110 yesterday morning, to 440 by evening, and 700 this morning! To be fair, she’s still on GCSF (a white blood cell stimulant), so her body isn’t producing these counts on its own yet. Today they halved the dose, hoping her system will kick in naturally. Over time, we’ll taper off completely and watch her body recover on its own. For now, this “burst” is helping speed up premature healing.
Just yesterday Dr. Mian predicted she wouldn’t need oxygen until the weekend—and here she is, once again, in that one percent. Always outside the box, always unpredictable. But when she starts to heal, she bounces high. Engraftment began four days ahead of schedule—in true Avry fashion.
Dr. Mian cautioned that we’re not out of the woods. I told him, “I see her actively healing today, and I’m just going to be this ray of sunshine in the corner—so let me know if I’m being too optimistic.” He smiled and said, “Optimism never hurt anyone.” But I feel in my heart this is realistic optimism.
For now, she’ll stay on steroids today, and we’ll begin to slowly taper. Tomorrow, we’ll try to increase her feeds as she tolerates them. This is critical—if we wait too long, the body can develop food aversions, rejecting nutrition altogether. Still, we need her ANC to stay between 500–1000 for three days straight without stimulants. Her platelets also need to remain stable. (As ANC recovers, platelets naturally drop.) She got platelets Thursday, but the real test will be next Thursday, once they’ve run their full life cycle.
To my surprise, Dr. Mian said he’d love to see us home by the end of next week! There’s a lot that needs to fall into place between now and then—and that’s without complications—but still, hearing that—we’re all shocked!
It’s pure joy to see her sitting up in bed and even better to hear her chatter. Her words get clearer every day, her energy a little stronger. We’ve started to wean her off the morphine drip and the other eleven pumps on her pole. As much as I want to bring her home, I know better than to rush it. We’ve been sent home prematurely before, only to come right back the next day—that’s brutal for all of us.
Meanwhile, Jake caught something. 🙈 With a COVID exposure on the floor, they’re being extra strict, so he went home until he’s no longer symptomatic. He felt pretty rotten, but I’m just so grateful it wasn’t Avry. Today marks day 21 in the hospital, and I’m aching to step outside. At home, Jake’s been working on putting together a king-sized bed in the downstairs master so we can all sleep together again. It’s been months of one of us in bed with Avry and the other on the couch. And we’ve had enough.
Meg arrived Thursday, which means Trace is back home. His time at the Grabers’ was the best thing for him—structure, family rhythm, a schedule. Perfect timing for school prep. Having Meg here the next few months is such a blessing—she’ll handle school drop-offs and pickups and Trace can be home at night. I think we’re all ready for the predictability of the school schedule . Even Avry is excited about Meg!
Sleep deprivation level: expert. I could probably qualify for the Olympics at this point! The first 2.5 weeks were so intense and it’s catching up. My blood pressure has been trending very low (sleep deprivation) and that makes it really hard to keep going when I need to. Lack of sunlight, exercise, proper nutrition, and no ‘scheduled sleep’, high stress all takes a toll. And —we’re so grateful for my health to be holding up so well!
Today Dr. Cohn shared that the radiation unit here in Austin might be back up and running within two weeks. That would mean no travel out of town after transplant round two—what an answered prayer. I asked him if Avry was the first stage 4 neuroblastoma patient here to reach a Curie score of zero before transplant with this exact plan (using Naxci immunotherapy). She is. And there’s another little girl, diagnosed three months later, on the same plan—also at zero. These oncologists really are cracking the code. Few hospitals are even using this exact treatment yet.
This past week, as Jake and I looked back at photo memories that popped up from two and three years ago in Pennsylvania, we couldn’t help but reminisce. We absolutely loved the life we lived there—with our church, our school, and his business. It never made sense why my health couldn’t handle the cold weather or why we couldn’t stay and keep building on that rich foundation. But once again, we reminded ourselves of this truth: God knew we needed to be here in Austin for treatment. There’s a strong tug on our hearts as we watch Trace’s school in PA start up again (oh, how I wish both my children could experience that school and church life!). Several of the teachers even came to visit us late this summer, which only deepened that longing. Still, we have no doubt that God had us in Pennsylvania for a reason—for the connections and friendships we made in that season—and that He was already directing us back to Dell Children’s for this kind of excellent care. There’s no question He could have used any hospital, but He chose this one. Life’s interruptions often turn out to be God’s redirections—His way of arranging circumstances to accomplish His will and to protect our family.
All that to say, we are deeply grateful for those two years in Pennsylvania and the rich relationships that continue to carry us even today.
Avry’s skin is healing. The burn sites have peeled, leaving fresh, tender skin that’s painful and so hard to keep clean. Clothes have to be soft and thin, no sweat or chafing, and we’ve added a sheepskin under her sheets. The spot on her head has scabbed, and the sores aren’t worsening.
I’m hopeful we’ll start getting her out of bed this weekend. Today she sat up and did a little crafting but tired quickly. I’d love to bring a tricycle in for her to ride around her room when she’s stronger. It’s the easiest “PT” I can think of—and probably one of the few things I won’t have to beg her to do.
This morning her ANC was 4500! We’re discontinuing her GCSF and praying that her body will do the hard work of healing and producing enough white blood cells on its own🙏
Dr. Cohn sat down with us today to give a quick overview of what to expect next month as we prepare for transplant #2. We’ll have about three weeks at home (with 2–3 clinic visits each week) before starting round two. This round will begin with high-dose chemo, followed by transplanting Avry’s own stem cells.
The two biggest concerns once again are:
1. Infections
2. Organ failure
The risk of organ failure is much higher in round two, and the hospital stay will be longer. We are pleading for your prayers—for protection, for strength, and for a smooth, uncomplicated transplant. Avry’s organs held up beautifully this time, but the second round will be harsher.
You may wonder: Why are two transplants necessary when her Curie score is zero?
It’s because cells divide rapidly—and cancer cells even faster than healthy ones. Neuroblastoma is one of the most aggressive childhood cancers, so the treatment must be equally aggressive.
Some parents choose to stop after the first transplant, or even after the initial chemo and immunotherapy, because the process is so grueling. And I fully understand why. But research shows that double transplants, followed by radiation and another five months of chemo and immunotherapy, give the best chance at long-term survival without relapse.
This road is unbelievably hard, but we are committed to the course—with eyes fixed on the hope that Avry will not only survive but thrive, cancer-free.
I watched and read Dr. Greer’s story from Cook’s in Dallas—she’s a neuroblastoma survivor who, at a young age, decided she was going to become an oncologist specializing in neuroblastoma. And now, years later, she practices at the very same hospital where she was once treated!
Her story gives me chills. It fills me with courage, and it validates so much of what we’re walking through.
And then there’s Deb. She has outdone herself organizing fundraisers—gathering friends and youth, planning, preparing, creating, and marketing. If you’ve supported in any way—purchased, prayed, contributed—THANK YOU. We are humbled by the massive love poured over us. Deb has also been managing my Flodesk emails and other PR tasks these last few months. The behind-the-scenes grind often goes unseen, but I want to acknowledge her and her family’s faithfulness. We are so grateful for their dedication!
As we close out this week, our hearts are lifted in praise to God—for His blessings, His protection, His healing, His strength, and the comfort only He can bring. We are especially grateful for the way He carries our burdens, often through the kindness of others.
Thank you for the thoughtful packages sent for the children and for the steady support you continue to show our family. We are blessed!
Rose for the Schapansky’s
“Trouble knocking at my door today
Rose for the Schapansky’s
“Trouble knocking at my door today
I ain't gonna let it in
And worry wanna steal my joy away
But I ain't gonna let it win
'Cause on my best day, I'm a child of God
On my worst day, I'm a child of God
Oh, every day is a good day
And You're the reason why
I'm so blessed, I'm so blessed
Got this heartbeat in my chest
No, it doesn't matter about the rest
If I got You, Lord, I'm so blessed
And when I count the problems that I see
Hope looks all but gone (yeah)
But when I count the ways You're good to me
You got me counting all day long, oh, yeah“
Comments
Kathryn Torkelson
We continue to pray for your family so often. For healing and strength…patience and endurance…for a light in the dark and a song in the night…and above all, God’s overwhelming presence through it all. Keep looking up and believing in the miracles❣️
Chantal.beaton
Michelle Imhulse
Martha Seitz
the next few weeks and let us be home. In Jesus’s name I pray.
Judy King
God is good. And as you have said, He knew before she was ever born that cancer was in her future. And He has given her body the strength to fight it. Glory to God!
Anna Dougherty
Dear Lord please heal Jake fast so he can be with his wife n little girl again and be able to help Rose. Thank you for carrying Rose but please also let her get rest! Thank you for providing a helper for them!
God bless you as you so amazingly walk this journey with your family! Praying for your family! And lots of love!
Renee Hurley
Lisa Goodwin
Veronica Ward
Sheryl Butcher
Lynda Arrants