Saturday, September 20, 2025
In support of
#miraclesforAvryJo
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#miraclesforAvryJo
Our Time at Home Is Over
It’s hard to believe we’ve been home for a few weeks now and it’s time to go back to the hospital. It feels so right to be at home and I can’t believe how easily we’ve fallen back into semi-normal home rhythms. It wasn’t without exasperation in the first two weeks. Avry has gotten so much stronger than when we brought her home! It’s been so fun to see her “running” around the house! I thought to myself, so this is what it would be like to have a 4-year-old girlie.
Week one was a lot of holding her and assuring her we weren’t leaving her behind. She has so much separation trauma, and that resurfaces whenever she is weak and not feeling well at all. On top of that, she’s been through another sedation and she knows by now what it means—separation. Ugh, it just wrecks a child! The first two weeks were long with medicines all day and managing feeds. Her care took all day and all night. This is when it’s easier to be in the hospital in a lot of ways.
I look back at those photos and I cannot believe how far she’s come! The swelling has decreased significantly and she is eating on her own through the day—with an appetite stimulant. Such a big win! It’s so nice not having to lug her feeding backpack everywhere she goes and being so careful with her tubies.
She doesn’t play on her own—without someone next to her. Yesterday she told me tearfully, “Mom, I’m so bored because there are no little children to play with and I don’t know how to play.” She is so intuitive and verbalizes her own frustrations so well. It’s okay. It will come back, but being isolated isn’t over yet, so I’m not pushing independent play right now. It’s okay if she’s my shadow for now.
We have made so many yummy things in the kitchen! She begs to help and asks to cook and bake. It’s been so much fun making our own meals and setting the table and cleaning up the kitchen messes. Last week she started asking for scrambled eggs and hot chocolate—and she actually ate them!! That’s her little “kick” right now. Another “she’s back” moment! Our favorite is to go to the back porch swing with her hot chocolate.
Her porch swing has gotten so much use this time at home. Brea—a little girl who rang the bell just before we arrived at Dell—nominated Avry to receive a gift of her choosing from Team Summer. She could have chosen a swing set or playhouse, but it’s so hot in TX and she needs to stay out of the sun. This swing has been such a great way to get outside and still be in the shade. It’s a bed swing—so Avry can lay on it comfortably when she’s not feeling well. It’s been such a highlight and a blessing to our family!
Avry’s skin has come a long way in the past 5 weeks. She has no idea what her back or her head look like—and it’s a good thing she doesn’t, because she would be devastated. She saw a little bit on her legs and belly and was absolutely horrified. I told her she is metamorphosing into the most beautiful butterfly. All of her skin is peeling, so itchy, and very splotchy. Dr. Kohn said she has never seen a transplant patient that didn’t look just like Avry. I don’t like that we are going into second transplant and her skin is not 100% healed. We’re praying about this!
We’ve been going on golf cart rides daily. When we first came home, it was the first time we really got to see her! Her anxiety melts and she sings her little heart out. Even still, the rides offer her a reset when she is scared or worried or just not feeling well. Another blessing to her and our family!
Avry really doesn’t like when Trace goes to school and Jake goes to work. She just adores her family all being at home, and it’s her greatest joy when they walk in! I figure the neighbors can hear her squeals!
We have been making as many of her wishes come true as possible—starting with Christmas cookies and hot chocolate. We finally found pumpkins! One is our thankful pumpkin we write our gratitudes on every November, but the children couldn’t wait so we started already. We found little ones to paint and Avry is so excited!
Her biggest wish was to go to camp at the beach. To her mother, it felt like the worst idea for keeping tubies clean—not to mention all the medical supplies we’d have to take there. But her daddy has charming ways of convincing her mama…and so we left on Friday! The temperature was perfect! There was a constant breeze and it was not too hot at all. We arrived Friday evening in time to set up camp on the beach. We watched the sunset and headed to our favorite spot for ice cream.
Meg brought Trace down Friday morning after an eye doctor appointment. He managed to puncture his cornea, so the beach was far from ideal for him. But we decided not to cancel our plans, because Trace knew how important it was for his sister. He wore his eye patch and started making canals immediately—all day of playing in the sand!
Avry was so happy when Trace came. She actually ran off to play with him for a few minutes. She got down in the sand and helped to build a few sand castles. She mostly sat and watched and laughed at Trace. Trace quickly made friends on the beach and they were catching crabs and playing with them.
It was so fun to hear “Mom, I’ll race you” as we ran down to the water! Avry stayed out of the water—she’s too prone to infection. That night, we roasted hot dogs and had s’mores over the fire. There is just nothing like camping on the beach in the evenings with the roar of the ocean behind you, sitting by the fire with twinkly lights overhead. Jake went to bed early with Avry, and I stayed up late with Trace. We sat in the sand, dug holes, and talked for hours. We both needed that.
He asked big questions like, “How do you know Avry won’t die? When will we stop living apart? Avry’s not really Avry…” I couldn’t promise him anything. I was 100% honest with him about not knowing—but that we are hopeful, and that God holds her timeline as He holds all of ours. Once the hard and heavy conversations were past, he relaxed and dug a deep hole and started a fire in it. He said, “The boys at school mock me for being a city boy —but they should see me now!” He axed all his own kindling and used a match to start the fire. He kept blowing on it until he had a nice hot fire. His dad taught him well!
He’s had a tough few weeks in school. There’s just nothing easy about any of this. He struggles with motivation—and who wouldn’t, with so many big things on his mind? He keeps asking when we’re going back into the hospital, how long it will be, and how sick Avry will get. He’s had scary nightmares. To the onlooker, he might seem to have behavioral issues, annoying, seeking attention, trying to prove his worth, unloveable. To his mama, he’s hurting inside in the worst sort of way—scared, and just a sad little boy who wants his family back together and lays awake at night praying for his little sister.
Behavior is just a symptom of something much deeper. It doesn’t mean he gets a pass on bad behavior. It means it’s a delicate balance—which we as parents are agonizing over.
There’s no guidebook on how to parent the child with cancer, or the sibling. And when you as the parent aren’t the constant—but the one to pick up the pieces every time you come home—it’s jarring. It felt like everything we’ve taught him went out the door. What happened???
It has taken these weeks at home, and finally now that we’re ready to go back in, to get the kids at a good place. Last evening we went out and I told Jake afterwards, “I didn’t want the evening to end!” It was perfect! No meltdowns from either of them. They were kind and thoughtful of each other, and everyone around them. They were polite, remembered their manners, and treated each other and us with ultimate respect.
Jen told me last week, “Rose, you’ve got to believe it’s still there.”And it is! Mom used to tell us to treat our siblings like our best friends—that we should treat those we live with the very best. And that’s exactly what we got to have the last few days. It gave me so much hope! No, I have no doubt in my mind it will all go to pot again over the next hospital stay and we’ll have to go through this mess all over again. But I have hope that it’s NOT all lost—that we won’t all end up in an asylum at the end of this. That we CAN and WILL still be fully functioning humans, that we can be a family when we survive all of this!
The heaviest burden on our hearts right now is Trace. Please pray for his safety while we cannot be with him, and for his heart—that he would hold onto hope, stay tender, and find courage to rise up in this battle he’s been asked to face. We are praying: “Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go” (Joshua 1:9). May he feel God’s presence beside him and draw strength from it every single day.
Please also pray that school would go smoothly, and that his wonderfully kind and understanding teacher would be given extra grace as she relates to him in this season. Jake reminded me, “a mother’s job is to worry,” but I can’t shake this awful ache—I just long to be his present mother and stop depending on everyone else to do my job.
Avry loved the golf cart rides at the beach. We have wonderful photos and videos of our family singing on the golf cart, riding along the beach. I look back at a year ago when we were there, and it was such a different experience. It’s all so bittersweet. She notices everything—the details in the clouds, the bright flowers, the colorful houses. She stops to smell things and exclaims over the intricacies of life. She used to love dark chocolate, especially thin peanut butter cups, but had such an aversion to them—until we made s’mores with them on the beach. She ate a whole one and was thrilled at how yummy it was. These little sneak peeks bring tears of joy and hope.
One of my favorite memories was seeing Trace and Avry lying together in the camper, belly laughing—just being silly, happy little kids. Avry would sass Trace, and he would just laugh. We went out on a boat and saw dolphins, which was such a highlight for them both. We tried family photos with a timer, which turned out blurry and silly, but still captured the moment. Andrea B surprised me by screenshotting one and sending it to Margie Yoder, who painted it for us. That painting is one of the most meaningful gifts I’ve ever received. I don’t know how anyone paints emotion. But When I look at it, my heart both breaks apart into pieces and is comforted at the same time. There’s a rawness in the lines and edges that feels so symbolic. And yet, so much comfort—because I know the joy of that moment, and the miracle it is that we were all standing on that beach together.
On Monday morning, we planned one last mountain pie breakfast before boogie-boarding on the waves and then heading for home. After breakfast, a light rain blew in. When the sun came back out, Trace was eager to finally get in the water since his eye had healed enough to see clearly. With goggles, he ventured out, but soon both he and Meg were stung by jellyfish. Nothing severe, but enough to keep the rest of us out. Jellyfish don’t travel alone, and we weren’t taking chances. We saw dinner plate sized jellyfish every day before wash up onshore!
Not long after, the sky turned dark and moody, and Jake said, “We need to get out of here.” We packed up quickly, and the rain poured as we pulled away from the beach. It rained hard most of the way home. We had lunch in the camper with the rain pounding on the roof! Most of the way home the children snuggled in bed. It was the sweetest way to travel the three hours home. I can’t imagine Avry sitting that long in a car seat. And this way, I wasn’t overwhelmed with all the medical equipment. We had everything in one place, clean and contained. Those three days at the beach were truly a gift, and I’m so glad for the doctors who nudged us to get away. Usually by the end of a trip we’re ready to come home, but not this time. None of us wanted it to end.
Jake would run into town each morning for coffee and hot chocolate before sunrise, and the children and I would be outside waiting for him. Those sunrises and sunsets will always be extra special to us.
Back home, Avry begged to “go on the hills” most evenings, so we drove to Tahitian Village. The roads there are steep, and she loves when we take the Jeep with the sunroof open and windows down. She throws her hands in the air and squeals with delight as we climb the hills. Her laughter is contagious. She’s living out the meaning of “joyful in tribulation.”
Thank you for the presents, crafts, gift cards, and personal checks you’ve sent. The children look forward to the mail each day—it has brought so much joy into their little routines.
Another highlight has been picking up Trace from school. Usually Avry has just woken up from her nap, and while it seems like the most boring, normal thing, it has felt like such a luxury. The children chatter on the ride and often beg to drive past our old house. It just feels so good to do something so simple, so normal. Most days I feel like my heart could just explode!
This week I asked friends to come over and help assemble soup kits. Together we made 50 kits to give to the transplant doctors and nurses afterward. We set up an assembly line, and Avry had the best time measuring out the celery seed for every single bag. She was so proud to be part of it!
Saturday, we all went to Trace’s first fall baseball game. He’s been practicing twice a week, and it felt so good to be there as a family. It was too hot for Avry outside, so she and I stayed in the van, but just being there, watching him play, was a gift!
We even managed to tackle our garage, which has been bugging us ever since we moved in. It had become a dumping ground, but we finally went through everything and cleared it out. It made us grateful all over again for Erics and Lamars-who did all the heavy lifting to get us moved when we were stuck in the hospital this first few weeks! That job was enormous, and they carried us through.
I also pruned the crêpe myrtles that had been calling my name for months. That led to cleaning the flower bed, which led to clearing out the freezers, which led to baking two pumpkin pies—all the day before heading back to the hospital. It felt so good to get things in order. I still haven’t packed, though—I’ll probably wait until the last two hours before we leave. Packing is my least favorite job.
We are deeply humbled by the generosity we’ve received—financially, emotionally, physically. God keeps showing up through all of you. We wouldn’t be “this okay” without your intervention. Thank you, thank you, thank you!!! We pray God blesses you in ways we never could.
It’s not easy to go back in tomorrow. Honestly, we’ve spent little time allowing ourselves to think about it. Two weeks ago, we were given the “what to expect” paperwork as we signed off the final details. With a second bone marrow/stem cell transplant, the risks are higher—risk of infection, organ failure, and more hearing loss.
She was supposed to try on her new hearing aids between transplants, but her little body has been through so much. I just couldn’t see asking her to adapt to something new on top of everything else. I spoke with her oncologist, and he agreed. We’ll wait until after transplant, and before radiation, to begin that process.
We know a little more of what to expect this time, but that almost makes it harder. Our transplant coordinator, with 18 years of experience, told us this is one of the worst things she has ever seen parents witness. There really are no words to describe it. And so instead of trying to find them, I’m asking—pleading—for your prayers.
As we prepare to enter Avry’s second transplant, our hearts are heavy yet hopeful. We know the road ahead is filled with uncertainty, but we also know the power of prayer and the comfort of this community standing with us. If you would join us in lifting these requests, we would be so grateful. Every prayer spoken over our girl and our family carries us and reminds us that we are not walking this road alone. 💛
🙏 Family Prayer Requests as We Enter Avry’s Second Transplant
💛 For Avry
Physical
• For her little body to withstand the harsh chemo.
• For minimal side effects from the chemo.
• For her digestive tract to continue functioning well.
• For protection over her ears—that she would not lose any more hearing.
• For protection over each of her organs.
• For the safe transport of the stem cells from Dallas to Dell.
• For the stem cells to be viable and successful transplant.
• For effective pain management.
• For minimal wound care and quick healing.
• For her body to heal completely and fully.
Emotional/Spiritual
• For her tender heart as she faces the disappointment of returning to the hospital.
• For her courage and determination not to waver.
• For her to feel our love and devotion even in the moments when she’s in too much pain to speak or is unaware.
💛 For Trace
Physical/Practical
• For his safety and protection while we cannot be with him.
• For school to go smoothly each day.
• For his wonderfully kind and understanding teacher to be given extra grace, patience, and wisdom as she relates to him in this season.
• For daily rhythms, routines, and care to help him feel secure and supported while we are away.
Spiritual/Emotional
• For his heart to stay tender and not grow hardened by disappointment.
• For him to hold onto hope and find courage to rise up in this battle he’s been asked to face.
• For him to feel God’s presence beside him and draw strength from it every single day (Joshua 1:9).
• For him to feel deeply our love, even in our absence, and to know he is never alone.
• For peace in his heart as he misses the presence of his mama and daddy.
💛 For Jake & Rose
Physical/Emotional
• For grace to endure the suffering.
• For calmness and trust as parents.
• For us as parents to remain sure, steady, and grounded.
• For us to advocate with love and respect.
Spiritual
• For strength to keep believing in miracles.
• For the ability to remain bearers of light in the hospital, even when the atmosphere feels dark.
• For us to see and vividly feel the hand of God every single day.
• For us to not feel so isolated and alone.
We have witnessed miracle after miracle because of your prayers, and we know that every one has been felt and heard. Over the next two months, as Avry walks through her second transplant, we need our prayer warriors more than ever before! Please continue to stand in the gap with us — believing for protection, strength, and complete healing. Your prayers are the lifeline that hold us up when our own strength runs dry. From the depths of our hearts, thank you for fighting with us in faith.
-Our story for God’s glory
-Our story for God’s glory
Comments
Rosalie Oberholtzer
Sheryl Butcher
Sarah S
Annezimmerman16
Come Thou Fount of every blessing, tune my heart to sing Thy grace; Streams of mercy, never ceasing, Call for songs of loudest praise. Teach me some melodious sonnet, Sung by flaming tongues above; Praise the mount-I’m fixed upon it-Mount of Thy redeeming blood. ❤️
Cheryl Kones
Faith Sommers
Gina Miller
We serve a mighty God who is able to do exceeding abundantly more then we ask or think!
We pray that you and your little ones would experience that in the long hard days ahead!
love Alvin & Gina Miller