Tuesday June 10
In support of
#miraclesforAvryJo
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#miraclesforAvryJo
This morning, we woke up with smiles! Avry wanted to sit on the couch, so I made her a cozy little nest while I got ready for the day. She was thrilled when I suggested wearing her princess dress—since tomorrow is a big day and she likely won’t feel well enough to dress up, today felt like the perfect time.
It’s been a calm day overall. She received her MIBG dye in preparation for tomorrow’s scan. Later, we went down to see where the dye was settling—to check if it’s entering the bone marrow before it spreads too far. I’m so grateful for this extra layer of cancer detection. The dye makes the cancer cells “light up,” helping the team get a clearer picture of exactly what we’re dealing with.
Tomorrow is the big day: Avry will go into the OR for her MIBG scan, a 3-hour MRI, a bone marrow biopsy, and a bone marrow aspiration. The aspiration involves inserting what they describe as a “three-penny nail” into the bone to draw out marrow. It’s deeply painful and leaves her unable to move much for several days afterward—typically at least five before she begins feeling somewhat normal again.
This morning, we got a bit of fresh air and went to feed the fish. Avry loves seeing the turtles and tossing them Cheerios. Today we spotted five large koi and just two turtles. When it started to drizzle, we headed back inside, but Avry wasn’t ready to return to the room yet. We stopped by the front entrance so she could play with the balls, and then visited the gift shop where she used one of her gift cards to buy Chutes and Ladders! I tried explaining that the goal is to go up the ladders and down the slides—but she just wanted to go down the slides and didn’t care about winning. Pure joy.
Later, Apples the clown visited and brought lots of laughter. She gave us a coloring page and asked us to make her look better than the other clowns in the picture—saying one is very sick and the other couldn’t come back due to COVID vaccine rules. She made sue we knew her colleagues are very old and that she’s no going anywhere! She blew bubbles and, as usual, put the red clown nose on me instead of Avry (since Avry has her nasal tube). That always makes Avry so annoyed, so this time Apples gave her two red clown noses and stuck them on her ears! “I’m a cow now!” Avry giggled, completely delighted.
Just as we were settling in for a nap, the tech came to take us for her pre-MIBG test. I asked Haleigh to grab Sam from Child Life and off we went. Avry did amazing. She’s still terrified of “going in the hole” (MRI/CT scanner), but she’s come such a long way in the past three months. I’m incredibly proud of her resilience.
When we returned to the room, Crystal was here! She had been with Trace this morning until 12:30, then dropped him off with Glory for Ranchhand Camp. Trace was bursting to tell me about it—especially the jump rope contest! He said, “I showed them some private school! I took off my boots, ran in, did hot pepper, and the counselors couldn’t turn the rope fast enough!” I asked what prize he was trying to win. “You know I’ll do anything for strawberry Twizzlers!” he laughed. He’s learning to tie knots and is really excited about his new horse book. I’m just so grateful he has something to look forward to each day—and for Glory and her mom making it all happen. When she called Sunday and offered to help, my first thought was no. Jake is working this week, and I’m in the hospital—handing over the reins isn’t easy. But she didn’t hesitate. I’m learning to lean on people, even when it’s hard. I’m thankful for those who show up and step in.
Avry didn’t nap today, but she’s still doing remarkably well. She’s tolerating her feeds, and—praise God—she’s completely weaned off the morphine drip. She’s a completely different little girl than she was just a week ago.
Physical therapy came in and played for a bit. Michael had her standing on the couch, drawing on the window with crayon markers—she stood for nearly 15 minutes! Later, Crystal and I took her to the playroom for another half hour.
Tonight, Crystal is staying overnight with us. I’m hoping to sneak in some computer work—and maybe even make it down to the café once Avry falls asleep while Crystal stays with her. Glory is staying the night with Trace, and he seems to be doing well following his recent asthma attack.
✨ A little logistical update:
The hospital social worker connected me with Abby from advocacy, and she introduced me to this new platform we’ll be using moving forward: the Support Registry.
It’s a centralized space where I can share all of Avry’s updates and needs—transportation, meals, errands, prayers, financial support—all in one spot. And unlike GoFundMe, it doesn’t take a large portion off the top of donations, which means your support goes directly to Avry. This switch comes at the perfect time as we prepare for surgery and isolation for stem cell transplant.
We’ll continue sending Flodesk email updates for those who don’t use the new platform, but CaringBridge and GoFundMe will be discontinued. Our first update will be live on here tonight.
Thank you for walking this road with us.
With so much love,
#MiraclesForAvryJo 💗
P.S. checkout the needs/prayer requests
P.S. checkout the needs/prayer requests
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