What’s the cost for more time with a loved one?
Kaisy and Melany Knott wait in the airport before flying to Mexico for one of Kaisy’s experimental treatments that cost $33,000.
MOUNT AIRY, Md. — If someone you love is dying, how much are you willing to pay for just one more day with that person?
Doing the math, Melany Knott figured it cost about $1,100 a day. That got them 21 months.
“No regrets,” Knott said. “I wouldn’t change a thing. And I won’t wonder about anything.”
David and Melany Knott auctioned off chain saws, goats and guns to raise some of the $695,000 they spent for their daughter. They raided their savings, college funds, maxed out credit cards and doubled down on double shifts. They did fundraisers at the county fair and ran online tote bag sales to pay for untested treatment offered at a medical clinic in Mexico.
This was not the battle for a cure to their 13-year-old daughter’s monstrous, fatal brain cancer.
The doctors behind the mystery treatment have published zero studies on their findings and won’t even disclose the ingredients of the custom chemotherapy cocktails.
But the Knotts, of Mount Airy, Maryland, were willing to gamble. One more day. One more month with their child. Maybe, one more year, even?
This began 21 months ago, when the youngest of their four daughters, Kaisy, was having severe headaches. She was diagnosed with diffuse intrinsic pontine glioma (DIPG), an aggressive, inoperable, incurable, 100 percent lethal brain cancer.
“It felt like I was being stabbed in the head,” Kaisy explained recently while waiting at an airport, on her way to one of her $33,000 treatments in Monterrey, Mexico. And then, the pain stopped.
She went from being unable to raise her right arm or walk to swimming in the ocean, kayaking, riding roller-coasters and showing her hog and steer at 4-H competitions.
Other families started flying to the Mexico clinic from around the world — Norway, London, Italy, Australia — to take in the experimental and controversial cocktail of drugs.
Her Facebook page, Kick Butt KK, attracted thousands of followers. It all lasted 21 months.
Kaisy died this past Monday.
“Mom, I can’t do this anymore,” she told Melany Knott, in their Mount Airy home Sunday night. She went from showing animals at a fair last month to being bedridden in a matter of weeks. On Monday, there was one last “Mom.” And then she was gone.
Would her mother do anything differently?
All that flying, the fundraisers, nearly $700,000 gone. She has three other daughters, all in their teens, one in college.
Nope.
The U.S. doctors told her to “go home and make memories,” she said. But Kaisy —the little girl who always won big awards showing her giant livestock — is a fighter. And Knott was going to fight for every single day.
“You do anything for your kid,” she said.
They decided, in these fighting days, they would do anything Kaisy asked. They were lucky that Kaisy had simple, country tastes. No trips to Disney World or Paris.
They dropped everything to go to Ocean City, Maryland, on a Thursday when they didn’t have hotel reservations. They got Starbucks whenever she asked and made 52 paracord bracelets.
“We were looking for quality,” Knott said. “And the Mexican treatments were less invasive and gave her quality.”
Melany Knott was thrilled when President Donald Trump signed the Right to Try Bill in May, which allows people with life-threatening illnesses to get access to experimental treatments and to bypass the Food and Drug Administration for approval.
“She was the courageous one. The one who made me come out of my box” said Knott, 40, a daughter of truckers who has lived her whole life in rural Maryland with hogs, horses, steer and dozens of chickens.
Kaisy made her mom ride a roller-coaster for the first time, go to the beach, ditch a day of work. She flew on a plane for the first time, got a passport, left the United States for the first time, rented an apartment in Mexico, became best friends with a medical school student named Caesar who took care of Kaisy when they were there for treatments.
“I love all my girls for different reasons,” Knott said. “I don’t love any of my other girls for the same reasons I love Kaisy.”