Liana is a spunky, lively, feisty twelve-and-three-quarter year old girl who loves frogs, guinea pigs, and dirt. When asked what she’d like to be when she grows up, she replies, “Frogologist.” She is active, inquisitive, unabashedly curious, and persistent. She is a scientist and is never short of questions, always hungry to learn.
Months before, when she began growing more tired and having less energy, we suspected anemia, especially as she had menarche just a few months prior to diagnosis. Her appetite decreased, her skin was pale and white, and she began experiencing sharp pains in her legs. Shortly before everything went down, we went hiking, but she had to stop every hundred feet or so to catch her breath and deal with her leg pains.
That wasn’t normal. Little did I know that she was inches from death. Her hemoglobin was so low (2.6), she should have seized and had a heart attack right there on the trail.
Miraculously, she didn’t.
One night, while getting ready for bed, Liana collapsed in the bathroom. Her legs simply wouldn’t work. That’s when we realized this was beyond our help. We rushed her to the ER, to a hospital forty minutes to our south. We drove two cars, one with Kristie and Liana, and one with Zoe (her younger sister) and me.
We were sure she had anemia.
But other things didn’t line up. Why were there stabbing pains in her legs? Why was she having vision problems?
My wife Kristie stayed with Liana at the ER that night, and we decided for me to head back home with Zoe.
I was in the car, about to turn into our neighborhood, when Kristie called me from Pardee hospital around midnight with the frantic news: “Stephan, turn around. It’s leukemia. Get down here. Now.”
My mind didn’t register that. Denial. What? How on earth?! Cancer? Our daughter? How?!
We eat organic! Our food bills reflect that. We get out in the fresh air. We take care of ourselves. We minimize what we know to be toxic and try to emphasize what we know to be good.
How on earth could this happen?
So everything shifted in a blink. A parent’s worst nightmare. I turned the car around. I headed back to the hospital. My mind spun like a tornado. Something inside me clicked into survival mode.
I drove, but as we talked, we decided that it didn’t make sense to have Zoe have a lousy night’s sleep on top of everything else. I turned around again and brought her home.
I tried to sleep.
The smaller hospital to the south didn’t have a pediatric oncology unit, so they ended up transferring her to a larger hospital nearer to our home that did.
We met with the doctors. We had consultations. They tried to be understanding.
But dear God, our family just got torpedoed below the waterline.
So many decisions. Lots of forms to sign.
Acute myeloid leukemia.
They said it was genetic, that she just won the wrong lottery. I think there’s truth to that, as Liana has a second cousin that also had the same type of leukemia.
But I’m also of the opinion that something triggered the gene on. And if we could find that, that could be a game changer.
Well, so began the routine. One of us would be home with Zoe, the other would be at the hospital with Liana. Then we’d switch, often passing like ships in the night.
We began to get used to beeping machines, nurses sneaking in to the room to collect vitals, sleeping on an uncomfortable “bouch,” and doing endless research on this foreign entity called leukemia to determine what pathways would optimize life for our daughter.
Technically, Liana is in remission. Her last MRD was .09%, just barely over the threshold of .04%, and that necessitates an extra month of chemo.
We got into a COG study using CXP-351 (Vyxeos in adults) to determine its efficacy on children. In the blinding whirlwind of shock, denial, and making life and death decisions for our daughter, we opted for participating in a study that, in theory, uses a drug that has more heart protection in its chemistry than standard chemo. We luckily (we hope) landed in the experimental arm of the study, and have so far received two rounds of the purple chemo. We’re hoping it helps her more than harms her.
Liana thankfully does not have any of the negative genetic markers of AML, and has one positive one. Call that a “best worst” scenario. But her MRD means she will be in for a full five rounds of chemo, or about five months in the hospital. As of this writing, two months are almost down, three more are yet to go. So far, a bone marrow transplant is not necessary.
Liana is experiencing the side effects the drug calls for: a wicked rash, hair falling out, and mucositis. She’s tired and wants the chemo to stop. She doesn’t want to have cancer. She says it’s not fair.
She’s right.
But we press on, leaning into hope, and scouring the literature for anything that would help tip the scales in her favor. And in her heart, Liana doesn’t want anyone else to have to go through what she is right now. It hurts too much. If we could stop one other child from having to go through this, it will be worth it.
