At 39, Melany Knott didn't have a passport.
She'd never flown on a plane. She was too busy caring for four children, three cows, hogs, horses and dozens of chickens in rural Taylorsville, Md.
That was in January.
Earlier in August, she was at Ronald Reagan Washington National Airport in Virginia -- again -- boarding an airplane with her terminally ill daughter, Kaisy, and heading to their apartment in Monterrey, Mexico, and another round of experimental treatment at a hospital in the city in the foothills of the Sierra Madre Oriental mountains.
"Never," Knott says. "I never imagined I'd want to go to Mexico. Or any of this. But you'll do anything for your kids."
Knott and her youngest daughter Kaisy, 12, fly to Monterrey every three weeks, hoping for a miracle.
Their 4-H life was upended just nine months ago, when the headaches Kaisy was having were diagnosed as diffuse intrinsic pontine gliomas, an aggressive, inoperable, incurable, 100 percent lethal brain cancer.
"It felt like I was being stabbed in the head," Kaisy explains. Her eye turned inward, the pain increased and slowly she couldn't walk well or use her right arm.
Between the travel, drugs, hospital fees and doctor payments, the trips to Mexico cost the family $33,000 every time. Insurance covers zero.
So the Knott family drained all their college funds, their savings, leaned on their credit cards and scratched for every penny they could raise to pay for treatments they believe are the miracle cure to keep Kaisy alive.
"Every day," Knott says. "Every second I wonder if I'm doing the right thing." And not just because of her daughter.
Thanks to an online discussion group about diffuse intrinsic pontine gliomas, where Kaisy's progress is the subject of intense interest, 52 children from around the world and the country have pulled out of their traditional treatments and are now shuttling to Mexico every three weeks, also hoping to make history, to be that child with the cancer who will be the first to become an adult.
But one of those children, Julianna Sayler, who lived on a small farm in Walla Walla, Wash., just died. She was 8 years old and had been treated in Seattle and London before getting treatment at Hospital Angeles in Monterrey.
Kaisy is so famous there, she and her mother are escorted by medical staff acting as bodyguards when they move around the hospital. Because desperate families want to see Kaisy, to touch her and talk to her and learn for themselves whether she is the one.
A BRUTAL CANCER
This awful form of cancer first gained recognition among American doctors in 1962, when astronaut Neil Armstrong's daughter, Muffy, had those same, stabbing headaches that Kaisy had. And her eyes, just like Kaisy's, began to turn inward. She died just months after doctors discovered the tumor at the base of her brain. Since then, between 200 and 400 children die from the cancer every year, very few of them living longer than a year after diagnosis.
A diffuse intrinsic pontine glioma is especially brutal because it's a tumor that forms in the brain stem in an area called the pons. The pons is really the control center for subconscious life; it's where heartbeat, breathing, swallowing, eye movement, eyesight and balance are controlled.
So far, the tumor has been impossible to operate on. And because it is behind the blood barrier, a semipermeable membrane inside the brain, an effective dose of chemotherapy, radiation and most anything else can't get to it.
The cancer most commonly hits children between 8 and 10 years old. The dozens of Facebook pages, GoFundMe campaigns and family homepages are difficult to look at. All of them have side-by-side photos of smiling, happy children in soccer uniforms, at swimming pools or school, and then the unrecognizable, bloated faces, crossed eyes and withered arms of kids in wheelchairs. The transformations often happen in a matter of weeks.
"Our kids aren't cute, that's one problem," Knott says. "And I just think not enough of them are dying for the doctors to really look for a cure."
Ophthalmologists kept trying to fix Kaisy's lazy eye, which started turning inward last fall. Doctors kept giving her Motrin for her headaches. Finally, after she called her mom screaming because her head hurt so much, a hospital did an MRI on her brain in November. By 10 p.m. that night, Kaisy's parents were told she probably had only six months to live.
"They basically just told us to make memories, there's nothing they could do," Knott says.
Kaisy underwent the traditional course of chemotherapy and steroids at Johns Hopkins Hospital in Baltimore and Children's National Hospital in Washington. Her face and body ballooned. She kept going to her 4-H events, showing her hogs, taking her steer, Smokey, in and out of the barn every day. "He's 1,405 pounds now," she says.
"I wasn't going to stop living," she says. "You don't just stop and die."
At night, Knott spent hours learning everything she could about the brain, about the pons, where the tumor is located and the treatments out there.
She runs a small business cleaning offices and homes. But her new side gig is amateur neuroscientist and she explains the minute detail of neural functions with the same precision of experts.
"You have to learn all of it cold," she explains. "Or the doctors will eat you alive."
She followed the webpages of children getting revolutionary treatments in London -- where they create a port right in the head, with tiny catheters delivering drugs directly into the tumor. She read about children going through radiation treatments in Australia, looked at all the pictures of their bloated faces, wheelchairs at the beach and amusement parks, making memories.
She began keeping records, checking off the children who died, highlighting the ones who lived longer than most.
GOING SOUTH FOR TREATMENT
In January, she settled on where to pin her hopes: Mexico. The children who had the inter-arterial treatments and immunotherapy there lasted the longest. Her charts told her that.
Kaisy's tumor was only 2 months old. The other children who had gone to Mexico -- and didn't survive -- arrived after the tumors were more advanced.
That's the thing with diffuse intrinsic pontine gliomas. The cancer moves so fast, parents don't have more than a few months to decide on a course of action. And so many of them hop around -- Germany is doing something new, now London -- that solid data on what really works is hard to come by.
The cocktail of chemotherapy drugs used in Mexico isn't too different from what most children were getting in other hospitals, according to families. Because the doctors in Mexico aren't working with other researchers, it's not clear if what they're doing would pass muster with the U.S. Food and Drug Administration.
Still, something in Knott's gut told her it was the right place to try to save Kaisy.
"I told my husband I'm getting on a plane," Knott says. "He was so mad at me. He didn't believe it. He just wanted to make memories. I got a passport in three days and got on a plane by myself. He wasn't talking to me."
After meeting the doctors and showing them all of Kaisy's records -- she keeps them organized in a flower-covered, three-ring binder -- the oncology team agreed to treat Kaisy.
In February, they went for the first treatment.
Within two weeks, Kaisy was feeling better. They stopped the steroids, and she began to slim down. She could walk with less pain. And she could move the right arm that had stopped functioning.
SEARCHING FOR A CURE
Doctors in the United States are working on this confounding cancer.
Principal investigator Javad Nazarian leads a research team specializing in the cancer at the Children's Research Institute at Children's National Health System in Washington. He believes doctors will make huge strides in controlling the gliomas soon, and it will be a combination of treatments -- chemotherapy, radiation and immunotherapy.
"The tumor is sitting behind the blood-brain-barrier," Nazarian says. "Crossing the blood brain barrier is not easy; most drugs do not cross."
Some treatments involved higher dosages of drugs. But Nazarian says that kids aren't just little adults, and dosages can seriously affect the rest of their bodies, and bigger dosages aren't always beneficial.
Doctors from across the country are able to share data thanks to donations from families who have lost children to diffuse intrinsic pontine gliomas. Parents and researchers are pushing for more federal funding. Nazarian says he cannot comment on the treatments in Mexico because doctors there haven't made all their data public.
One of the children whose progress sent other families to Mexico, Parker Monhollon, a 9-year-old from Kansas, died in July.
"Parker. That was a hard one," Knott says. But she still believes it's the right thing for Kaisy.
The hotels in Monterrey are expensive, so Knott found an apartment. And an Uber driver named Cesar, a medical school student, became their Mexican cousin.
The 10 or so days they spend during every treatment in Mexico are endured, not enjoyed.
"I hate it there," Kaisy says. For her, Mexico isn't tortillas or the beach or anything else an American kid might associate with our southern neighbor.
"We're country people," Knott says. "Monterrey is a city. We're not comfortable there."
But she's impressed with the way they've been treated. "The people. They are so nice to us. The doctors. It's like the humanitarian part is the most important part of medicine to them," Knott says. "Once I told them: 'Why are you being so nice to us? Is it because you think we're rich Americans? Because we're not.'
"And they says that no, the people are important to them."
Because Cesar knows Kaisy loves animals, he created a fish tank and got baby turtles for her to play with while she's there for her treatments.
At home, their local Mount Airy 4-H Club has held fundraisers for them. There was a steer auction. At a Howard County Fair demolition derby in Maryland, three cars raced on Kaisy's behalf.
For Knott, Mexico is a Hail Mary.
"Listen," she says. "According to the doctors, we should have buried Kaisy by now. It's been nine months, and when she gets back from Mexico this time, she's going to show her hogs at the Maryland State Fair. That's something, right?"
Family on 08/30/2017