3 min read

In a glass room, Karley Blouin lies in bed. Machines help her breathe. IVs feed her tiny body. A narrow tube drains fluid from her brain.

Since Sunday, the 20-month-old Lewiston girl has been in a coma. It’s the latest effect of a brain tumor, a type so rare that few cases have ever been recorded.

Since her surgery on May 20 to remove the tumor, Karley has endured a blood infection, paralysis of her vocal cords and a stroke.

Her parents, Wendy and Mike, spend hours with her every day, holding her hand and talking with her at her bedside in Maine Medical Center’s special care unit.

The couple’s composure and pragmatism have won the admiration of Dr. Eric Gunnoe, a pediatric intensive care doctor at Maine Medical Center.

“They are very strong young people,” Gunnoe said Tuesday. “I admire the whole family.”

The parents fear phone calls and that drive to the Portland hospital. So much has gone wrong.

“Right now, we’re just numb,” said Karley’s dad, Mike Blouin. “There’s not much that would surprise us now.”

The family has been fighting the illness for more than two months.

At the start of April, Karley began showing signs of something wrong. She started throwing up. She began bumping into walls and developed a curious kink in her neck, what they later learned was Karley’s attempt to see through distorted vision.

“All she ever wanted to do was smile,” Wendy said. “Even when she was sick, she smiled.”

At first, doctors explained it away: flu and ear infection. They prescribed physical therapy. The symptoms persisted.

“I just had this gut feeling,” said Wendy, who had been searching for clues on the Internet. “I knew something was wrong.”

Eventually, she demanded a CAT scan. It showed a tumor the size of a plum.

That was Monday, May 17. Three days later, Karley underwent a 12-hour operation to remove the tumor.

Insurance is paying for much of the expense, but not all. A worker at General Electric’s Auburn plant, Mike has been away from work for much of the past three weeks.

Friends and family, some from the West Coast, have arranged to be in Lewiston to take care of Karley’s brother, 3-year-old Ryan, while his parents are in the hospital.

The tumor, known as an “atypical teratoid/rhabdoid tumor” or ATRT, was so rare that doctors have only been able to describe it for three or four years. It’s a particularly aggressive kind of cancer. Chemotherapy used to fight it must be injected directly into the affected part of the brain.

After the surgery, the Blouins thought the worst was over. But three or four days later, Karley suffered a stroke, something that doctors had warned was possible but highly unlikely.

“It seems everything that’s highly unlikely,’ our daughter gets,” Mike said.

For now their plan is to hold on. If Karley can recover from the coma in the next two weeks, she may be eligible for treatment at such hospitals as the Dana-Farber Cancer Institute in Boston.

“They gave her a 10 percent chance of getting through the operation,” said Karley’s father.

She’s already beaten those odds.


Comments are no longer available on this story