Monday, July 14
In support of
#miraclesforAvryJo
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#miraclesforAvryJo
Monday, July 14
Our room felt like it had a revolving door this morning! I guess all the different teams decided to take advantage of us being here. We had a handful of people coming in and out—including a few more transplant consent forms to sign.
Psychiatry came by to do their evaluation as well. Up until now, we’ve worked with child life and psychology, but one of the oncologists wanted psych to weigh in pre-transplant. The first week of transplant is called conditioning—that’s when they give high-dose chemo. One of the chemos they use can cause chemical burns on the skin if it’s not washed off every four hours for five straight days. So Avry will have to take a full-body shower every four hours around the clock—with no tape or dressings on her body. They’ll have to get really creative with keeping her ports secure.
Why so intense? Because if those burns lead to infection, it could compromise the transplant. And a compromised transplant means it won’t be viable. And a non-viable transplant… means death.
That’s just one piece of what’s required that first week. Another is a very thorough physical exam three times a day. These things may sound small, but for Avry, they’re huge. And when she doesn’t feel well, these procedures become traumatic—for her, and for everyone in the room.
The first psychiatrist who came in today stayed for nearly an hour. He asked a lot of questions—about my medical history and Avry’s. He wanted to make sure there weren’t any preexisting mental health issues before cancer. You can imagine how much fun that was. 🙃But in the end, I felt like he got a clear picture of who our little girl really is. I was thankful the doctor happened to come in and do an exam while he was there—he got to witness her reaction firsthand.
Later, the attending psychiatrist came in. One of his first questions was, “How do you think Avry is doing emotionally?”
My response was simple:
Avry is three years old and has been diagnosed with stage 4 cancer. Her entire life has been turned upside down. We now live in the hospital more than at home. Our family is rarely all together. Nothing is normal, and nothing is predictable. Before diagnosis, she was perfectly healthy. And considering everything, I think she’s doing incredibly well.
Does she spaz sometimes? Yes.
Does she have anxiety and medical trauma? Of course.
Does she trust doctors? Not always.
She is responding exactly how I would expect a three-year-old to respond to these circumstances.
So when they brought up the idea of giving her an antipsychotic, my question was: is that for her, or is it for the doctors? Because even after a difficult exam, she returns to her baseline within a minute. She’s not out of control. She’s overwhelmed and traumatized. And I’m her mom—I know what this child needs to feel safe in her little world.
So again—who exactly is this for?
I didn’t catch the doctor’s name, but I’ll tell you this: he heard me. He completely agreed. There is nothing wrong with Avry. And he said point blank, he is not about to drug her into lethargy. He acknowledged that there is a place for those medications—but not here. Not when the side effects could impact her development, her cognition, and her already fragile organs.
I explained to him that the times Avry “acts out” are always right after immunotherapy—when she’s loaded up on some of the hardest drugs you can give a child, and she’s in immense pain. But when she’s not hurting, she does talk to the doctors. She high-fives them. She smiles. She engages.
This isn’t a behavioral issue. This is a three-year-old living through something most adults couldn’t survive. She’s scared. She’s in pain. She doesn’t understand why people keep touching her and poking her and asking her to cooperate while she’s suffering.
And if she doesn’t say “please” or “thank you” in that moment—because someone is squishing her belly or giving her a shot again—I’m not going to force her. And neither should the doctor. 🙈
The psychiatrist looked me in the eyes and said exactly what I’ve been saying from the start:
This child is having a completely healthy and normal response to extremely abnormal circumstances.
Before he left, he said, “I know I’m just a psychiatrist—and to some, that doesn’t feel like a real doctor… but I care deeply about your child.”
He asked about our family’s support system and how we’re processing everything as a whole. He was so kind and attentive. He let me speak. He validated my concerns. He advocated for us. And he said they’ll continue checking in on us daily during transplant—which truly means a lot to me.
He also affirmed that the recent hearing loss is definitely contributing to her anxiety. And that matters, too.
That was the bulk of our day.
Avry had a few good moments. She’s very tired. Her heart rate finally dropped into the mid-150s during a long nap, and she was able to get some solid rest. She had a blood transfusion today, and her color looks so much better.
Linfords left mid-afternoon, and tonight Jake and Trace came in for supper. It felt so good to just be a little family again, all in the same room. Avry was pretty tired, but you could see how much she lit up just having all of us there with her. She really wanted to go on a ride, but we’re still on isolation precautions and confined to our room for now.
I can’t get over how dark her little head is getting—there are so many tiny dark hairs growing in all over. I remember when her eyebrows disappeared and most of her lashes fell out… it took a while for my heart to adjust to that. And now, seeing them come back in—it catches me off guard. I find myself just staring at her sometimes, soaking her in. I know they’ll likely be wiped away again in just a month… but for now, it’s a beautiful little reminder of what’s possible.
She asks me every single day when she’ll have a long ponytail again. I tell her, “Hopefully by next summer.” But she’s decided it’s going to be her Christmas gift. 🎁
The social worker offered to have a wig made for her through one of the foundations, any style she wants—but Avry wants nothing to do with it. She’s holding out for her real hair.
Tonight, her heart rate is creeping back up near 200 again. She may be working up another fever. They’re starting her on blood pressure meds tonight—a common side effect of chemo. The doctor actually said they’re surprised she made it this long without needing them.
Right now she’s pretty snuggly and just wants me close.
And so, I stay next to her. ❤️
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Malinda Koehn
Cindy Hanus
Vickie Warkentin
And you Mama are So Beautiful❕
Sending Love & Strength & Courage
Keeping you & your Precious Family Always in my Prayers! ♥️🙏🕊️