East County daughter finds stability while struggling with cancer

MANATEE COUNTY — For Eric and Lexi Creviston, the five years following the birth of their twin daughters have brought them the both the truest joys and the deepest of sorrows.

Their daughter, Kali, who was diagnosed with cancer of the spinal cord and brain stem well before her first birthday, had yet another good doctors report in December. She and her sister, Hailie, celebrated their fifth birthday June 8.

“(The cancer is) still there, but it’s not spreading,” Eric Creviston says. “That’s the best news we could get. Finally, we’re getting to a stable place.”

BEGINNINGS
Eric will never forget the emotions that rushed through him the first time he held his newborn daughters.

“When I got to hold them both in the operating room, it was a little overwhelming, but at the same time — I don’t know how to describe it,” Eric says, shaking his head. “The rest of your life is right there in your arms.”

He and Lexi had planned to have a baby but were shocked at five months of pregnancy to learn they’d be delivering twins. Their daughters — Kali and Hailie — were born June 8, 2006, in Springfield, Ill.

Lexi’s blood work and ultrasounds had come back normal throughout the pregnancy, but soon after the girls’ birth, it became clear the two girls were having trouble holding up their heads. At 2-months old, Hailie and Kali were diagnosed with torticollis, a common weakening of one side of the neck.

Doctors put the infants on four months of intense physical therapy and hoped for improvement.

“It was awful,” Eric remembers. “You would have to turn their necks where you couldn’t turn your neck. Hailie was OK. Kali got progressively worse.”

Both girls ended up wearing helmets to help reshape their heads as part of efforts to correct the problem. Kali still was not improving and had to wear a collar to keep her neck aligned. Eric ended the experimental treatment early.

“I couldn’t stand it,” he says.

BIGGER PICTURE
Although the girls were battling torticollis, the Crevistons believed their daughters otherwise were in good health, at least until they were at the mall having pictures taken with the Easter bunny.

Kali, then about 7 months old, suffered a seizure.

“I was an EMT, so I knew what it was,” Eric says. “She started clawing the side of her head, which isn’t a typical seizure.”

ER doctors told the Crevistons they were overreacting and said a temperature fluctuation had caused the seizure.

“That happened 11 more times,” Eric says, noting he’d asked for an MRI on six different occasions but was told the girls were too young. “Every time, we were sent home.”

After the 12th seizure, however, Eric wouldn’t budge on his demand. And two hours after the MRI, the Crevistons received a call.

“(The doctor) said, ‘Are you sitting down?’” Eric says. “As soon as he said that, I knew (it was cancer).”

Kali was baptized that night. The next day, she went in for surgery at St. Louis Children’s Hospital for stage-four cancer of the spinal cord and brain stem. After the initial biopsy, the surgeon determined if the size of his incision were just the width of a hair off, Kali would not survive. The risk was simply too great.
Doctors instead implanted a port in Kali’s chest and prescribed to her a year of chemotherapy and four months of radiation.

Two months after the surgery, Kali’s port ruptured.

“That was scary,” Eric says. “The surgeon said in 30,000 operations of ports, she’d never had one rupture.”

The chemotherapy killed Kali’s taste buds. The radiation stunted her growth and weakened her eyes so much doctors believe one day she’ll go blind from it, although her vision is fine today.

Eric stopped looking at how much he and his wife owed in medical bills a long time ago — after getting one for $375,000 with a monthly payment of $7,000. Instead, he worked out a payment plan with the hospital.

“You pay as much as you can,” he says with a shrug.

The Crevistons moved to the East County in November 2010. In April, Eric launched a new business called Grave Groomers, a cemetery restoration and beautification company that performs everything from basic stone cleaning to resetting stones.

BACK TO NORMAL
The worry never will completely go away, but the Crevistons are encouraged at their daughter’s most recent prognosis.

Kali, who was long subdued because of her medications, is beginning to show her personality more each day.

“Now, she’s crazy,” Eric says, laughing. “She’s hands-on.”

While Hailie is more likely to sit on the floor with a puzzle, her sister is apt to scream into a microphone at the top of her lungs.

Both love swimming and their piggy banks — playfully called their “piggy boinks” — and relish dropping coins into them.

“That’s their car fund, they tell me,” Eric says.

Contact Pam Eubanks at [email protected].