7-27 thro 8-3 post scan results
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#miraclesforAvryJo
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#miraclesforAvryJo
Monday, July 27 we fully expected to walk into the Clinic, our family all dressed in Avry’s favorite color pink- to hear Dr Wells tell us Jo is cancer free! His body language and the non twinkling eyes told us everything. How do you even process ‘it might be nothing or you might only have a few weeks left with her.’
We walked out of the clinic with the heaviness that surprisingly didn’t affect the elevator. We said nothing to each other but like every other time- Jake and I knew how we would walk through this. We wouldn’t let the kids worry until we deemed it necessary. We would fall apart in private and be strong for them. We would carefully spend the next few days of waiting, loving them with so much extra kindness and care. And that’s exactly what we did! We went for long golf cart rides and sang our hearts out in worship. Jake and I drew from The kids strength and joy And the children from us. The way your whole world softens in the waiting…
It felt strangely like the first few days after diagnosis in that the ’ordinary’ kindesses, smiles, and sweetness made the tears run down our cheeks.
They called to say the earliest they could get us in for more testing wasn’t till Thursday when we were planning to leave for a little getaway to the mountains. Dr Wells called and let us know he’s working on it. His assistant called to say that’s not acceptable- they’re sending us to a different hospital to get the needed MRI the next morning! They weren’t messing around.
We put the kids to bed and I was putting a hospital bag together for Avry in my closet when Jake came in and we collapsed on the closet floor. Neither of us knew how to think or what to think. After a good hard cry, We hashed out every angle and what this could look like and made a plan for ‘either way.’ Dr Wells had already prepared us for what this could potentially look like and what decisions we may be needing to consider. Those are the things we talked over and shared our hearts so we knew exactly where the other person was. Places we never allowed ourselves to go in our minds until now. We came out at the same conclusions.
All of a sudden life softened again . Nothing else mattered. I looked at her sweet- dirty laundry basket in a way I’ve never looked at before. I wanted to bury my face in all the pink and inhale her scent.
We went to bed. ‘But Jake- it could be nothing.’ Neither of us slept. At all.
We left early for Dell North. Everyone was so kind! Each department came by to get our signatures. They wondered why the reason for the MRI and where she is in her treatment. We repeated the same- there’s a worrisomeSpot that they found. And at that, each dr, tech, nurses presence softened.
Everyone knew without us saying much at all…because this is the most common relapse spot for
Neuroblastoma. They knew…we didnt have to explain. They’d seen it firsthand.
They allowed me back with Avry. They were so compassionate. Avry cried for Jake and Trace who were just outside the big heavy doors. Avry was the first patient so we wheeled in back with the whole team following. We listened to ‘a million dreams.’ Not one of those Drs had dry eyes… they understood the weight.
The MRI tech was a big, broad, strapping Texan—the kind of man who just screamed Harley-Davidson owner, with sleeves full of tattoos.
And yet, he was so incredibly gentle with Avry Jo. Once she was asleep, I watched this big, strong man lift my sleeping girlie with such tenderness. And when his part was over, he turned and walked to his desk in the corner, his eyes brimming with tears.
There’s just something about Avry Jo. Especially in the most tender moments. Something about her courage wrapped up in that tiny little body. Something about the way she can soften a room without ever trying. I’ve watched grown men brought to their knees by this little girl. Maybe because strength recognizes strength.And sometimes the strongest thing in the room isn’t the biggest person standing there. Sometimes it’s the little girl lying on the cold metal MRI table. 🎗️💗
The anesthesiologist was incredible! He did his very best to
Make the transition go smoothly. He had given her a big dose of ketamine and waited extra time as to make sure she was good and sleepy when it was time to leave her with him. He was shocked it hadn’t fazed her…it was time to put the gas mask on and she was absolutely hysterical. I held it over her face and the anesthesiologist held her down until She fell Asleep. I kept talking to her thro tears the entire time and promising she’s safe. I left the room—-wishing to never ever do it again 😭 it’s so Awful. It goes against every motherly instinct.
I collapsed in Jake’s arms and we didn’t even try to hide our emotions from Trace. There we sat in the waiting room- the 3 of us holding each other. It felt way too much like the very first MRI 18 months ago when we were had No idea what journey we were about to embark on.
Trace was hungry so we headed to the cafe for breakfast. Then back upstairs to wait and watch for updates on the screen.
She woke up so happy! She was pretty groggy and couldn’t wait to be reunited with Jake and Trace and to go eat breakfast! Thank God she didnt remember much…
We didn’t expect to get the results until Wednesday morning, but we also knew Dr Wells wouldn’t wait around and would be calling them until he got an answer! He’s so good like that. He’s 9 months from retiring so he uses his seniority card. So so grateful he is our primary Oncologist!
We spent the day as a family. We all went for naps. When Jake and I woke up, we felt lighter. Like everything would be okay.
We packed for our mountain trip. Dr Wells made sure we kept our plans because either way- no matter what the outcome, he said it was very important we take this time.
Dr Wells’s called from his personal number. I was in the kitchen helping Avry make her hot chocolate. Jake came out of the bedroom-he grabbed me ‘she’s all clear.’ WHATT???
Dr Wells sent a text too. I read the text. “Congratulations! Avrys scans are clear. Go love your family and enjoy your trip to the mountains!”
What an emotional roller coaster!
What just happened?? Did God in fact take his finger and erase the spot on the top of her skull? Or was this just a fluke? But why would the MIBG pick up a spot there now if there wasn’t ever before?? If you understand MIBG and how it clings and lights up the cancer cells and how’s its so incredibly accurate for Bone marrow cancer…and it was the exact location of relapse…
There are so many details we may never understand this side of Heaven—and that’s okay. We don’t have to understand every detail to trust the One who does.
We trust a sovereign God. We trust that Avry Jo is still here on purpose, for a purpose, and that He has work for her yet to accomplish. There is still life for her to live, love for her to give, and a story God is continuing to write through her.
And we will never stop praising Him for graciously granting healing in her favor. We know not every family receives the outcome they desperately pray for, and we hold that truth with incredible tenderness. We don’t pretend to understand why.
We simply bow our heads in gratitude and say:
Thank You, God. Thank You for more time. Thank You for healing. Thank You for Avry Jo.
To God be the glory. 💗🎗️
OUR MOUNTAIN TRIP
We left for Utah early Thursday morning. Trace and Avry were so excited about flying! We flew into Salt Lake City and spent a few hours touring the city with Dr Paul. A highlight was going to the Mormon Tabernacle and hearing the organ rehearsal. Today it has 11,623 pipes, including some of the original wooden pipes from the 1860s. We’d planned to go back to hear the choir in the evening but the children were ready for bed early. So I went over to the conference to visit with my Coach colleagues as I wasn’t able to attend.
Friday we headed to Garden City.
Avrys wish came true to stay in a covered wagon just like Mary and Laura. It was too hot during the day to stay in the wagon but evenings it cooled off so beautifully! About 7:00, you could feel the mountain air coming down off the mountain. The scent from all the wildflowers was another of our favorite experiences when it cooled off! Oh I wanted to stay forever!
We went to Bear Lake, the Caribbean of the West. The clearest, bluest water surrounded in mountains! The beauty 🙌🙌 Trace and I tried our hands at paddle boarding at which he was much better at!
The area is know for their mountain raspberries and raspberry milkshakes. We enjoyed fish and salmon. It’s so much fun to watch my husband up here in the mountains because he just becomes alive! He’s right at home and loves showing the children all his favorite things about living in the mountains.
In the evenings, Trace had so much fun starting the fire just outside our covered wagon so we could roast marshmallows and watch the sunset. We were surrounded in mountains and the views were just breathtaking! The campground that housed only covered wagons was very natural- with grasses and wildflowers. There were lots of bikes and Trace made friends quickly and biked all over the property!
Bear Lake is about 6–8 miles wide, and the road follows its shoreline for roughly 48 miles straddling the Utah–Idaho border. We spent a day boating out on the lake. Trace had fun trying to wake board and Avry faced her fears and loved tubing behind the boat with either Jake or I.
One day we set out for Bloomington Lake Trail. The drive is more adventurous than the hike. Once we reached Bloomington Lake Trail Head, it’s only about ½ mile to the lake—roughly a mile round trip. The trail has a little climb at the beginning, but overall it’s family-friendly walk through high-mountain meadows, trees, wildflowers and little streams. Partway in, we came to a small, shallow mountain pond that looks like it could be the destination. But we kept walking. The trail continues around the hills and then the real Bloomington Lake begins to appear beneath the cliffs. WOW! The beauty and the mountain air and the COLD water… But the sun is hot! The UV is about the same as in TX.The lake is gorgeous. It sits at about 8,200 feet in a glacial cirque, with clear emerald/turquoise water tucked beneath enormous, steep rock walls. The headwall above the lake is actually described by the Forest Service as the steepest in the Idaho portion of the Bear River Range.
The water is very cold and glacier-fed, but people do swim. The lake is also known for its rope swing, although obviously anything involving jumping or swinging into alpine water carries its own risk. The swing was the whole reason Jake and Trace wanted to go! Trace was unsure at first because the water was freezing cold! Jake went a couple time before Trace was ready. The Trace ended up swimming the rest of the way across the lake! The hot sun made the water feel good but not above my knees. It was the perfect day- so much beauty! The hike was so fun/ Jake chuckled ‘you think cancer has aged you but you’re sure-footed as a mountain goat!’ That’s a compliment btw 😜
I will never get over the beauty of the mountains—the smell of the wildflowers, the rugged rocks, the crystal-clear water, and a thousand different shades of green. The cool mountain air, the quiet, the way everything feels so untouched and alive. It’s the kind of beauty you don’t just see—you breathe it in, and it settles deep into your soul. I can best describe it as those calendar photos you looked at as child and wondered if it was actually a real place!
We met up with some kind friends for dinner and dined on some of the yummiest sea food. I understand more fully why Jake says all the sea food in TX tastes like mud compared to Canada or the northern states! These friends of ours understand hard as they have a terminally ill little girl who is just younger than Avry Jo. He is a master fundraiser and has been most generous!
Did I mention there are NO bugs?? Jake always said everything in TX is out to kill you- snakes, scorpions, fire ants, spiders… we didn’t even use bug spray!
We drove back down to Salt Lake City, the long scenic way through Idaho, stopping at Geyser Park in Soda Springs, Idaho. It’s known as the world’s only “captive geyser.” It was accidentally created while drilling for hot water in 1937, and it erupts every hour on the hour.
We also visited the old one room schoolhouse in Henry, Idaho. And right beside it, The working historic Henry Store - Stampede Hills LLC. So much history packed into these little towns!
It was such a refreshing experience. And yet, woven into all that beauty and joy was this incredibly sobering awareness—we couldn’t help but think, this could all look so different if we had received the opposite results. The scenery would have been the same. The mountains would still be magnificent. Bear Lake would still be that impossible shade of blue. But our eyes would have been looking through an entirely different lens.
That realization doesn’t take away from our joy. If anything, it deepens it. It sobers us. It humbles us. And it reminds us once again that our times are in His hands. So often just observing the children and their JOY, the tears would just run! There’s this tenderness that happens in your soul thats inexplainable…
Every single moment we are given is a gift. And we don’t want to waste this gift of life consumed by things that simply dont matter. We don’t want to spend it whining about what isn’t perfect, rehearsing what’s wrong, or choosing misery when there is still so much goodness right in front of us.
We want to live.
Fully. Passionately. Gratefully. Softly.
We want to notice the mountains. Get in the water. Take the long way home. Laugh until our stomachs hurts. Tell people We love them while they’re still here to hear it. Forgive quicker. Worry less. Praise God louder.
Because after coming so close to losing what matters most, ordinary life doesn’t feel ordinary anymore.
Our times are in His hands. And while He gives us today, we want to be fully here for it.
-Our story for His Glory
ps. To be continued
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Cindy Hanus about 1 month ago
John Neuenschwander about 1 month ago