University of Iowa cancer care saves misdiagnosed 4 year old (2024)

VANESSA MILLERCedar Rapids Gazette

CLINTON — Most four year olds like goldfish crackers, french fries, chicken nuggets and white bread. And Scarlette Wheelock was no different. Until — in early 2021 — she was.

During the height of COVID-19 — a time rife with fear and confusion around the novel virus and its long-term effects — Scarlette stopped eating her favorite foods.

“She was like, ‘No, I can’t. I can’t swallow that,’ and I’d get frustrated because I’m like, ‘You just don’t want to eat, and you need to eat’,” Ashley Huebner, 32, said about her daughter — whose big brown eyes often conveyed more than her words.

“She was really delayed in her speech, so I was trying to figure out what was causing that,” said Huebner, who took Scarlette to an ears, nose and throat specialist and audiologist. They determined that while the child’s ear drums were fine, “her middle ear was just not working.”

Given Scarlette’s young age, determining her level of hearing was a challenge “because she couldn’t do the cues of letting them know if she could or couldn’t hear.”

Four years before — in the early morning darkness of Nov. 18, 2017, just two hours and 46 minutes after her own birthday — Huebner delivered a healthy baby girl. It wasn’t until her daughter hit age three that Huebner noticed her speech wasn’t developing correctly.

But then the pandemic consumed the world, including the Huebner house.

“Both her and I got COVID in December of 2021,” she said. “And then January to April, she started getting just random … weird symptoms.”

That was when Scarlette started saying she couldn’t swallow foods she’d always liked. And then she started vomiting every morning. Huebner took her to a pediatrician in Clinton, who diagnosed her with acid reflux and put her on medicine.

But Scarlette’s speech continued to stall and her hearing remained questionable. And then something more alarming happened.

“The right side of her face … it wasn’t working,” Huebner said.

So she took Scarlette back to the pediatrician, who this time diagnosed her with Bell’s palsy — a neurological disorder causing temporary weakness or paralysis on one side of the face, sometimes occurring after a viral infection.

“He said, ‘There’s nothing you can really do,’” Huebner told The Gazette. “It just has to work itself out.”

But it didn’t. And a few weeks later, Scarlette’s right eye began to turn inward toward her nose.

“And I’m like, that’s not good,” Huebner said. “So I took her to Davenport, and they looked at her and said we don’t have a CT scan. But we think she needs one right away.”

They told the family to head immediately to University of Iowa Health Care in Iowa City.

“They said she’s stable now, but if she wasn’t, we would send you by ambulance,” Huebner said. “And I’m just like, that’s really scary.”

It was April 2, 2022. A Saturday. UIHC emergency room doctors promptly ran a CT scan that gave Huebner the answers she’d been seeking — but didn’t want.

“They’re like, ‘Well she has a large mass on her brain,’” Huebner said. “And her brain is swelling. That’s why her eye is diverting. Why she’s throwing up every morning. Why she’s saying she can’t swallow. Because it’s all swollen.”

Scarlette had presented at both hospitals that day acting and feeling normal. She was playing on an iPad when UIHC doctors came in with the news and plans to rush her into emergency surgery to put a shunt through her skull to drain the fluid on her brain.

Without time to prepare herself or her daughter, Huebner watched as Scarlette was wheeled down the hall in a hospital bed.

“I was trying not to cry. Her dad was trying not to freak out,” Huebner said. “I’m like, I can’t let her see that I’m upset. So they took the bed out of the room, I walked with her down the hall, and the next thing I know the doors were there. And then they took her.”

After Scarlette was out of view, Huebner let herself cry.

“Because I’m like, she’s not going to know what’s going on.”

‘Keep her alive’

The next day, Scarlette endured a nine-hour surgery to “debulk” the tumor — leaving a small portion attached to her brain stem. Waking her up was rough because she had been intubated.

“I can watch her sleep with all the wires, but I can’t watch her struggle to breath,” Huebner said. “So my sister helped with that while I sat in the corner crying.”

Scarlette was quiet and confused once awake. She seemed tired and worn out.

“But you could see immediately that her face was working again,” Huebner said. “And she had really bad speech problems prior to it. And her speech wasn’t instantly better, but you could understand her a lot better.”

With her daughter now sitting up — long brown hair partially shaved, revealing two rows of stitches in a 90-degree angle — Huebner asked Scarlette if she wanted to know what happened. After trying to explain in terms a four year old could understand, Huebner said it was clear Scarlette mostly cared about going home.

But they needed a diagnosis and a plan first.

“A couple doctors came in and asked for permission to do research on the tumor,” Huebner said. “And if it was cancer, could they put her in a study? And I said, ‘Yeah, that's fine. You can study her all you want, as long as you keep her alive.’”

Less than a week later, Huebner learned her daughter had pilocytic astrocytoma — a slow-growing tumor that in her case was cancerous but had not spread.

“He said it's one of the most common brain tumors that kids get, and the survival rate’s pretty high,” she said of the doctor. “So I was very thankful to hear that.”

Because of the tumor’s slow-growing nature, Scarlette got to take a slower chemotherapy course — visiting Iowa City once a week, on Wednesdays when she didn’t have preschool, for a 15-month period.

“We would usually get there about eight in the morning, and then we would generally leave Iowa City about two or three in the afternoon,” Huebner said. “And then we'd always give her a little break or take her to do something afterward, like the trampoline park or the Children's Museum. So it was an all-day thing.”

Scarlette somehow never felt sick from the chemotherapy. And she always left her chemo treatments with “a bunch of energy.”

“I don’t know how that happened,” Huebner said.

Every three months, the family would head in for MRI scans to measure the tumor. “And every time it was showing that the tumor was decreasing,” she said. “So they were very happy with that. And I was happy with that.”

But she would hold her breath for every appointment.

“I still do,” Huebner said. “Right now we’re at every four months. The next one is Dec. 18, and I still hold my breath.”

‘The prognosis is very good’

Scarlette will have remnants of the tumor forever. And she permanently lost the hearing in her right ear. But doctors are hopeful the tumor won’t grow. Although one of the post-chemo scans gave the family a scare, Huebner said, closer inspection showed the mass had increased slightly because Scarlette herself is growing.

“But the prognosis is very good,” Huebner said.

During her UIHC treatment, Scarlette stole hearts across the Stead Family Children’s Hospital — dressing up in princess gowns, casting spells with magic wands and scaring the pharmacist with creepy crawly animal toys.

Scarlette rang her chemo-completion bell July 19, 2023, and they took her to the Children’s Museum to celebrate.

“I cried,” said Huebner, adding that while she’s very happy with the outlook, she’ll probably never stop worrying.

“I’m very happy with what has happened,” she said. “But in the back of my mind I’m like, that thing is still there.”

At age seven, Scarlette knows more about her cancer story than when she was living it.

“She knows that she had cancer and that now she just has to go get pictures taken of her brain to make sure that the cancer is not growing back,” Huebner said.

And while mom braces for the results, Scarlette worries most about the poke from the IV. But then she gets to come home to her Christmas tree — which the family put up early this year because Scarlette wanted to — and to her room with "Frozen" curtains and "Lilo and Stich" stickers.

She gets to climb inside her toy box painted with “Scarlette” in black cursive, where her only worry is for her female kitty, Georgie.

“Her can’t run away from dogs,” Scarlette said.