June 17 AM post op
In support of
#miraclesforAvryJo
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#miraclesforAvryJo
This morning I was going through emails and messages, and I just felt so encouraged. So covered. So blessed by your messages and your bold prayers!
I think we slept some last night, but we were up a few times every hour. Pain management is the big goal for today. By the end of the day, they would like to see her up and walking.
She is allowed to have water—which she’s thrilled about the idea but not actually drinking yet. Her bladder is working, which is a good sign, but it will probably take a few days for her intestines to fully wake up after being manipulated during surgery.
Jake and I have both commented many times how different this floor is compared to our oncology floor. Caitlin, the NP, warned us yesterday that MedSurg is like any other hospital floor. And now we get it. It reminded us how incredibly special 3 East really is. And to never take it for granted.
First thing this morning, Joni walked into our room—and Avry lit upand reached for her. It was so precious. Even our nurse was shocked and said, “She really knows her people from 3 East!”
It was such a full-circle moment.
Three months of building trust. Of learning each other. That matters. That connection means everything. We’ve always said 3 East is special- those oncology nurses are walking angels. Joni had looked Avry up in the system and came straight to our room. I had told her we’d be coming in Monday, so she was expecting us.
Joni told me that she used to work on MedSurg her whole life and only moved to oncology a few years ago. She said she wasn’t sure she could handle the heaviness at first, but she grew to love it. She loves getting to know the kids and families, being in it for the long haul. On MedSurg, the turnover is fast—most nurses don’t even bother getting personal because they probably won’t ever see the patient again. And honestly… it makes sense.
The protocols are a lot different on this floor. Avry has already been begging to go back to her room.
Dr. Naiditch came in this morning and is very pleased with how things are going. I love how she always says before leaving “have a medically boring day!”
Still, my heart aches for Avry thinking about getting up and walking tonight. Anyone who’s had a C-section knows the feeling. That first time getting out of bed is awful. But I have to remind myself—these kids are so much more resilient than adults.
Once we have her pain more managed, we’ll hopefully begin feedings tonight. If she tolerates them, the goal is to go back to the oncology floor tomorrow.
One thing I forgot to mention yesterday: they did remove her right adrenal gland during surgery since that’s where the tumor was invading. That’s standard for neuroblastoma patients.
Yesterday in the hallway, we met Dr. Katelyn. I told her I couldn’t imagine how this would stretch out to two years at diagnosis. I thought we were almost halfway through treatment with transplant on the horizon. But after she explained what comes after radiation, I understood. That feels heavy. And why we really can’t look ahead but just focus on today and find the rainbows behind the storm clouds every day. Katelyn said this treatment plan is the harshest therapy they give cancer kids. It’s long and brutal.
Kimberly (Emmets mom) told me to think of it like the three trimesters of pregnancy:
• The first trimester is 5 rounds of chemo
• The second trimester is 2 stem cell transplants and radiation
• The third trimester is 5 more cycles of chemo, then another two years of follow-up care
It helped me understand the long game.
It’s also not lost on me that when we first came into the ER—before diagnosis—they admitted us to this exact same floor. At the time, I didn’t even realize what floor it was. Now, it makes sense. They must have had a hunch and wanted her closely monitored.
Feels like déjà vu being back in one of those rooms again. The sweetness of just before diagnosis and playing Candy-land non stop contrasted with our world being shattered by the oncology team introducing themselves in room 311 that Sunday in early March.
This morning Jake went for coffee and took a few moments to go outside and breathe. I’m so glad he’s here with me. Avry has a lot of anxiety, and it’s so much easier when one of us doesn’t have to carry it all alone.
My sis Esther is home with Trace. She said he just wants to be near her. I told her—nothing else matters right now. Just be with him. He needs to feel loved without conditions. He needs to know he’s important, too.
Our little community was doing “Popsicles and Pages” camp this morning, and they were going to head over there. I’m so glad she’s here!
On Sunday night, I really wanted Avry to have a bath. It had been a few weeks since she was able to sit in the tub. I know sponge baths are fine, but I just would’ve felt better with her little bum sitting in clean water, especially since I knew it would be a while before she could do that again.
She still had her bandages on from her bone marrow procedures and was terrified of getting them wet. Jake and I tried everything to convince her, but nothing worked.
So I called Esther. She came in, and somehow—Esther was able to comfort her. The hysteria faded.
And for just a few minutes, I could breathe.
Just like this morning when Joni walked in.
It is such a precious thing to see someone else bring your child comfort when I can’t. It’s hard to explain, but when someone else can meet her where she is, when she lets them in—that means the world.
Janessa came in with a letter from Odessa. Avry smiled the whole time as Jake read the letter. The kindness and care for these people touches us deep.
After meeting Kimberly yesterday, and Jake and I trying to find perspective that we’re not even thro the “first trimester” yet— “I don’t think You ever go back to normal after this.”
I walked over to 3 East today and was welcomed back with open arms.
I can’t even explain how much that felt like walking home.
If I had ever imagined living hospital life pre-cancer, I would’ve said there’s no way. No way we could ever do that.
And yet here we are.
By the grace of God—doing it with honor.
And incredibly lucky and blessed to be in such a good place, surrounded by people who care for us and honoring their way to love our little girl and make her a
Smile.
Smile.
Comments
Angela Angela
Anna Dougherty
Lolorojano84
Kristy Koehn
❤️🩹🫂I’ll keep on adding my prayers to all the others! ✨
Melissa Flukinger
Jannichols62
Debra Martin
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