Edmond baby boy battling rare cancer-like disease

Kids with Courage
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OKLAHOMA CITY -  Karston is an active 9-month-old.

Like most babies his age, he keeps his mom and dad busy.

But as soon as Karston was born, his parents noticed troubling spots all over their infant son's body.

"Some of them were open. Some of them just looked like blisters," says Kyle McCall, Karston's dad. " And immediately they put him under the heat lamp and the nurses started counting the spots."

A day that should have been blissful for Kyle and Sarah McCall, instead quickly turned to one full of fear.

"That's not normal and my first thought was that's probably a cancer of some sort," says Kyle.

Tiny Karston was examined by several pediatricians after his birth while in the hospital.

Doctors could not figure out what caused the spots, so the family was sent to a dermatologist.

Kyle and Sarah hoped the spots would go away in Karston's first couple of weeks of life.

Instead, they got worse and a biopsy confirmed the couple's worst fear.

"The nurse called and told us it was this Langerhans Cell Histiocytosis, and of course, it took me a few times to even say it right," says Kyle.

Langerhans Cell Histiocytosis, or LCH, is a rare cancer-like condition that strikes when the body makes too many of a specific type of white blood cell that normally helps fight infection.

"They grow out of control only they're not cancer cells, they're normal cells," says Dr. Charles Sexauer, Karston's physician. "That differs from cancer, but it infiltrates these organs and causes them to go into failure and you can die from it."

In fact, LCH is so rare, only one or two infants in a million are born with the condition.

The family was sent to the Jimmy Everest Center for treatment.

A team of specialists started Karston on standard treatment in the first month of his life, but after six months, the baby's condition had not improved.

His parents agreed to try a different approach,  a cutting edge investigational therapy.

Kyle and Sarah could only hope and pray.

"It's hard, um, especially when you don't really know and he seemed so little," says Kyle, fighting back tears. "You don't-- you just don't know when there's so many different types, how it's going to play out."

But baby Karston put up a brave fight, and the family's prayers were answered.

"We worked up his body with scans and blood tests and we don't see any evidence of disease," says Dr. Sexauer, "and his skin lesions are all cleared."

It's the best possible news for Karston and his family.

"He's so much happier and he is so much more comfortable," says Kyle. "And now he does the things that a normal 9-month-old is supposed to be doing. He's sitting up. He's playing with toys. He's reaching for things."

Karston still has several treatments to go over the next nine months so he will continue to visit Jimmy Everest three times each week.

His parents give a lot of credit to the boy's grandparents for helping them take care of their son, and his older sister so Kyle and Sarah could keep their jobs.

A major goal of the Jimmy Everest Center is to provide the latest cutting edge treatments available to help courageous Oklahoma kids fight cancer, without having to leave home.

For more information about the Jimmy Everest Center, go to JECfriends.org.

"Kids With Courage" is sponsored by the Jimmy Everest Center for Cancer.

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