March 2020
Besides looking at his little bald head, I honestly cannot tell that Carter is sick.
He bounces up and down with the music from Mickey Mouse Clubhouse, which is playing on the TV. He teases us by throwing his basketball over the porch railing, knowing a grownup will have to go fetch it. He excitedly shows off how he can ride his tricycle like a big kid.
Carter, by all observable measures, appears to be a happy, healthy, thriving three-year-old.
I can see the adoration in Davida’s eyes for her son as she recounts his diagnosis, almost one year prior.
“It was May 19th,” she starts, “and we were actually on vacation in New York for my nephew’s graduation.”
Carter had been diagnosed with a urinary tract infection a few days prior to the trip and was on antibiotics. He seemed to be recovering well at first, but after the graduation ceremony, his energy levels dropped, his appetite dwindled, and he stopped walking.
They pulled up to their hotel that evening, and Davida told her sister, “Don’t park the car. I think something’s wrong, and we need to go to the hospital.”
In a wild frenzy of events, Carter was admitted to New York Presbyterian Hospital, received several units of blood and platelets, and was then transferred to Cornell. There, almost a thousand miles from home, Davida heard the words, “your son has cancer,” for the first time.
She shows me photos of that day, full of uncertainty and fear. In one picture, Carter’s shirt is ripped in half, and he’s snuggled under a Mickey Mouse blanket.
“I kept that shirt,” Davida says, “and he still has that blanket. I keep thinking we need to get rid of the blanket, but I’ll keep the shirt. It just occurred to me that that could have been the last shirt he got to wear, and I don’t know what I would have done. I’ll show him someday that the doctors and nurses ripped that shirt to save his life.”
The very next day, Carter was transferred by one of UAB’s medical jets back to Children’s of Alabama so he could start treatment for High Risk Pre-B Acute Lymphoblastic Leukemia.
Since that day, Carter has taken all of his treatments in stride. Davida tells me about the confusing days and weeks pre-diagnosis, when his unusual health concerns seemed mild but could not be explained.
“He had fevers that we thought were just allergies,” she says, “he was generally less active than normal, and he seemed uninterested in other children. Looking back, now I know it’s because he was in pain.”
Though it may seem counterintuitive, Carter is more “healthy” now while receiving chemotherapy than he was when cancer was lurking undetected in his body.
“Now we go to Homewood Library for story time, and he’s interacting, jumping around, having fun… You can tell he feels better.”
Carter loves the library! He also loves playing at the park, eating French fries, blowing bubbles, playing basketball, and watching his favorite TV shows on his iPad.
There are even some parts of treatment that Carter loves, where he really thrives.
“He loves triage when we go to clinic,” Davida says. “He walks right in, sits in that chair, and they ask, ‘which arm would you like to put the blood pressure cuff on?’ He gets to make some choices, and then he knows the routine of going to the scale, doing all that stuff.”
I can’t help but realize how consistent some childhood experiences are, even in the midst of incredibly unique journeys. Carter is three! He loves finding his boundaries and controlling some aspects of his life.
Of course, it hasn’t been all rainbows and sunshine. Walking the childhood cancer path is painful and difficult, even when you are able to find glimmers of hope along the way.
“We’ve really had to readjust,” Davida tells me. “I lost my job as a paralegal for a local law firm because I was in and out with him, being inpatient, and no consistent schedule. And it’s so hard to see him go through the mouth sores, the sickness, and there’s really nothing you can do about it.
“And of course, trying to balance out taking care of the needs of his brothers and sisters. I’ve missed basketball games, I’ve missed softball games… My other family will go to the games, but the kids wanna see Mom there too. That’s really been hard.”
Carter has five older siblings, and it sounds to me like they have really stepped up to help Mom take care of their baby brother. As far as teammates go, Carter has some great ones.
Nonetheless, the family dynamics of caring for a child with cancer are complicated.
As we sit around the kitchen table, laughing and connecting and reflecting, Davida thinks back to the days and weeks leading up to Carter’s diagnosis, and she contemplates what she would go back and tell herself if she could.
“The things you don’t think will happen to you… Just think about it. Just consider it,” she says. “I know I can’t beat myself up for not knowing, but I wish I had been aware.
“I was always trying to move so fast before. I wish I could go back and tell myself to just slow down.
“Cancer changes everything.” Now, when Carter doesn’t feel good, when he needs something, or when he just wants to be held, Davida has learned to just stop, be in the moment, and hold him close.
“Why rush?” she asks, more as a statement than a question.
All I can think to say is, “Don’t.”
Today Carter is continuing to fight, continuing to receive treatment, and continuing to thrive. His friends support him through it all, and he is blessed to have such a sweet family.
I hope you’ll join me in hope for Carter’s continued healing, celebrating and sharing his story, and donating to research in his honor. I will do anything to end childhood cancer because Carter is worth it.
Until there’s a cure,
Kayla
