Thursday August 7-day 4 high dose chemo pre transplant
In support of
#miraclesforAvryJo
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#miraclesforAvryJo
Thursday, August 7
Day 4 high dose chemo
Day minus 4 bone marrow, stem cell ore transplant
Last night was one of the best nights we’ve had in a while—restful, peaceful, and quiet enough that we could fall back asleep between the baths. This morning we let ourselves sleep in, waking up slow and easy, soaking in the rare gift of an unhurried start.
Dr. Mian and the nurse practitioner came in with the social worker just as it was time for Avry’s morning bath. The doctor admitted he wasn’t expecting mucositis to show up yet—he thought it would come over the weekend. Because it’s here so soon, he agreed that the best next step is to replace her feeding tube so we can get her the much-needed medicine to protect her organs.
This was a big decision because the tube means tape on her face—the very reason they removed it before—but it’s crucial to get it in now before her GI tract is too full of sores to place one at all. Jake and I both exhaled in relief. I’m so thankful for the nurse who advocated for us last night and for the social worker who helped move things forward.
The second decision today was to start the PCA—a morphine drip that will allow us to give her pain relief as needed by pushing a button at her bedside, within safe limits.
Once the morning bath was done, the team placed the new G-tube. She was such a trooper through it—none of it was fun, but she handled it bravely. Afterwards she curled up and fell asleep. Most of the day, she lay quietly with a pained expression, her mouth so sore and her body just not feeling well. She is so relieved not to have to take medicine by mouth anymore. She keeps asking, “Are you sure I don’t have any more medicine in my mouth tonight?” She’s also counting down the days until the baths are done—we’re in the home stretch now.
This afternoon I met with the social worker, who shared an interesting statistic: statistically, oncology moms get hurt at some point during long-term treatment. Well… with my foot injury, I guess I’m right on schedule. 🥸
Janessa came by several times today, which meant so much. She is one of Avry’s safe people—someone she trusts and loves.
Tonight, we finally got ahead of the pain for a little while after her nap, and she sat up to color for a bit.
The nurse manager, who has been doing transplants for 18 years, stopped in and told me it’s not uncommon to wonder, “What did we get ourselves into?” She reminded me that transplant is one of the harshest forms of treatment, offering so much empathy and encouragement.
Our nurses today have been with us since day one. They know us well, and that familiarity makes all the difference.
We also stopped counting at over 100 birthday messages for Avry! Each one was a reminder of the kindness, love, and steady support surrounding us. It’s hard to put into words what that means in the middle of such a hard fight.
It was a better day. And tonight, I’m so grateful—for the wisdom of the care team, for the moments we caught a breath, for the familiar faces who’ve walked this whole journey with us, and for the flood of birthday love that reminded us we are never alone. Praise for the million little miracles carrying us through.
Comments
Claytonnolt
Rhoda Jantz
Cindy Swartzentruber
Martha Seitz
I’m so sorry you have to go through this so that you can get well and be able to run and play with Trace. Keep being strong and this will all be over before you know. ❤️