Thankful people: Kagen Hill cured of hepatitis C

Kagen Hill's life has been a series of slim chances.

He was born March 1, 2005, and contracted hepatitis C from his birth mother, an IV drug user. The chance of transmission from mother to child is small -- only about 6 in 100, according to the Centers for Disease Control and Prevention.

Next was the chance baby Kagen captured the heart of a nurse, Kelly Hill, who eventually became his adoptive mother.

Kagen tested positive for hepatitis C when he was 19 months old, and as Kelly and her husband, Brian Hill, searched for options, it was discovered he had genotype 1 hepatitis C. Though it is the most common type, it also is the least responsive to treatment.

"It was scary. I got the call when I was at work," Kelly recalled. "The doctor said, 'I don't know what to tell you; I've never had a child test positive for hepatitis C.'"

Kagen Hill, 11, sits by the riverfront Nov. 16 in Cape Girardeau. Kagen was born with hepatitis C and has been cured due to a clinical trial at Cardinal Glennon Children's Hospital.ANDREW J. WHITAKER

The doctor advised them to take Kagen to St. Louis Children's Hospital, and for the next nine years, that's what they did.

Over the years, Kagen's treatment has involved a series of injections over 48 weeks; blood drawn for lab work every six months for as long as he can remember; ultrasounds every fall; and liver biopsies in 2010 and in 2013.

That's a lot for any person to handle, let alone a little boy.

But Kagen, now 11, never put up a fight.

"I'm used to it," he said, adding nothing ever hurt him too much.

Kagen Hill, 11, plays Pokemon Go on his mother's phone by the riverfront Nov. 16 in Cape Girardeau.ANDREW J. WHITAKER

"He never cried, he never complained. He's never been one to do that," Kelly said. "He's had to miss most of his field trips, and he's never gotten a perfect attendance award."

Each children's hospital visit meant a 2 1/2-hour drive from their home in Southern Illinois, and Kagen couldn't eat or drink before his labs and biopsies.

"We tried to make it a fun trip so he didn't dread going," Kelly said.

They would go somewhere fun to eat after his appointments, and once they went to Build-A-Bear, where Kagen got Rex, his well-worn and well-loved "sleeping buddy," who has traveled with him to every appointment since.

In October 2015, Kagen's doctor told the Hills about a few new drugs for hepatitis C, and he suggested they go to Cardinal Glennon Children's Hospital, which was about to start a clinical trial for the drug Harvoni.

Kagen Hill, 11, plays Pokemon Go on his mother's phone by the riverfront Nov. 16 in Cape Girardeau.ANDREW J. WHITAKER

Kelly did her research, gathering background and studying test results and discussing the information with Kagen's doctors.

"He said, 'I think you'd be crazy not to try this.' The side effects were so minimal in adults," Kelly said.

The Hills elected to do the clinical trial, and it was another slim chance Kagen got to participate: The drug was tested on 200 children in five countries, and only 80 of those children were in the 6- to 11-year-old age group.

Four children were in the trial in St. Louis, and Kagen was the only one in the 6-to-11 age group.

The drug came in pill form, and at $1,250 a pop, one requirement was Kagen be able to swallow the pills. He practiced with Tic Tacs at first, then washed the real deal down with banana- cream pudding.

Kagen Hill, 11, plays a game on his phone while sitting by the riverfront Nov. 16 in Cape Girardeau.ANDREW J. WHITAKER

He had no side effects or problems, other than an initial shock to his immune system that had him down with the flu and rhinovirus for two weeks.

But soon enough, he was back in school and playing baseball.

"He even stayed on the honor roll, even though he had missed so much school," Kelly said.

The trial lasted from Jan. 28 to April 21 this year.

Kagen's viral count was 3.6 million when he started the trial and was down to only 15 within a week.

Kagen Hill, 11, tosses a rock into the river while his mom, Kelly, watches Nov. 16 in Cape Girardeau.ANDREW J. WHITAKER

His viral count has been negative since February.

And finally, the biggest chance of all: Kagen has been cured of hepatitis C, along with the three other St. Louis children who participated in the trial.

His doctors said he never has to come back, although the Hills opted for a five-year follow-up to study the long-term effects of the drug.

"I can see the relief in him," Kelly said. "Hepatitis C is a chronic disease and it can take 10 or 20 years for it to do any damage to the liver. For him, that would have been in the prime of his life."

Obviously she and Brian are relieved, too, "that he doesn't have to worry about this for the rest of his life, that he won't have this hanging over his head."

Kagen Hill, 11, plays a game on his phone while sitting by the riverfront Nov. 16 in Cape Girardeau.ANDREW J. WHITAKER

Kelly said she feels lucky, in a way, to have experienced both Cardinal Glennon and St. Louis Children's Hospital -- most families experience only one of the hospitals, and Kelly can't say enough about Kagen's team of doctors there.

"We could leave the house at 8 a.m. and pull in at the hospital by 10:30. To have that kind of care so close is amazing," she said.

As for herself, she said the experience at those hospitals was an "eye-opener."

"You go there and your kid has issues, but there are others that are sicker," she said.

Her mother, Julie Klein, feels the same.

"You come home feeling thankful," she said.

As for Kagen, he's just thankful to be done with tests and back to school, baseball, soccer and catching Pokemon without any interruptions.

"A lot of kids would balk at what he's been through, but he never did," Julie said. "He's been such a little trooper. He just went with the flow and took his medicine."

Kelly encourages other people to look into clinical trials.

"For people with kids who are sick, this was fantastic," she said. "[A clinical trial] is something to look for when you've run out of options. Just try it. There's no way we would have been able to pay for and afford this drug."

For the Hills, joining that clinical trial was a chance worth taking.

"Everything with Kagen always seems to work out for us, even how we wound up with him in the first place," Kelly said. "I'm thankful for him. He's the greatest thing that ever happened to me."

rgautschy@semissourian.com

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