Mount Airy teen defying the odds of a terminal, rare brain cancer

Posted at 5:36 PM, Apr 19, 2018
and last updated 2018-04-19 17:45:40-04

Its the way a 13th birthday party should be. Balloons, face painting, horse rides, and a mechanical bull. What makes this particular party even more special is the birthday girl, Kaisy Knott, is here to enjoy it.

"We were told that we would never see her 13th birthday and that was a guarantee," said Melany Knott, Kaisy's mother. "So today is a huge birthday for us."

Kaisy and her family's life changed forever in November of 2016. Melany says it started when Kaisy got a lazy eye, which they fixed. Then came the extremely painful headaches. Melany took Kaisy to the hospital and she was diagnosed with DIPG, or Diffuse Instrinsic Pontine Glioma. It is a rare, childhood brain cancer that affects 300-400 kids a year in the U.S. and the survival rate is zero percent.

"We were told radiation for six weeks, to start looking at trials and to go home and make memories," Melany said.

But Melany didn't want to just make memories, she wanted Kaisy to live past the six to nine month life expectancy. After doing a lot of research, Melany found an experimental treatment in Monterrey, Mexico that is not offered in the U.S. She booked their first flight to Mexico in April of 2017.

"In the beginning we were staying seven days. We've actually narrowed it down to 50 hours. We can fly in, have a treatment, fly out," she said.

The treatments are expensive. Melany says they can cost anywhere from $20,000 to $30,000 and that doesn't include lodging, food and travel. Insurance doesn't cover the costs. Its an incredible financial hardship on the Knott family but Melany says they won't stop the treatments.

"We have sacrificed quite a bit and we will continue because she's still here with us," Melany said.

To help offset the growing medical bills, the Knotts fundraise through schools, fire departments, 4-H clubs and lodges. Melany says she is amazed by the support of the community, who is supporting Kaisy every step of the way.

"Its all because of the kid that she is, the personality that she has."

Melany says since they started the treatment in Mexico, Kaisy's tumor has decreased in size. She still has physical side effects but is back to school, back to riding her horse and continues to compete in 4-H events. 

Her mom attributes part of the success of her treatment to Kaisy's personality. She says before the diagnosis, Kaisy was a daredevil, a spitfire and spoke her mind.

"I believe she's still like that to a degree, because I think half of her treatment is her being that way. Her positive attitude toward what she has," said Melany.

Kaisy has a fundraising website through the Patty Pollatos Fund (click here). You can also follow her Facebook journey here and find information on upcoming fundraisers.

Kaisy's treatment is not currently available in the U.S. Johns Hopkins is in the process of evaluating a recent trial on a treatment option for children with DIPG. You can find the details here. They would not comment on the results of the trial until the evaluation is complete.