How much would you pay for one more day?

The Prince George Citizen - - Lifestyles - Pe­tula DVO­RAK

If some­one you love is dy­ing, how much are you will­ing to pay for just one more day with them?

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.”

The Knott fam­ily auc­tioned off chain saws, goats and guns to raise some of the $695,000 they spent. They raided their sav­ings, col­lege funds, maxed credit cards and dou­bled down on the 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 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 gliomas (DIPG), an ag­gres­sive, in­op­er­a­ble, in­cur­able, 100 per cent lethal brain cancer.

“It felt like I was be­ing stabbed in the head,” Kaisy ex­plained to me at the air­port last sum­mer, on her way to one of her $33,000 treat­ments in Mon­ter­rey, Mex­ico. And then, the pain stopped.

For a while, Kaisy was hailed as the Mir­a­cle of Mon­ter­rey.

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 that doc­tors in­jected into the chil­dren’s ar­ter­ies.

“There she is! It’s Kaisy!” they would say when they saw her in the halls of the Mex­ico clinic, Me­lany said. And med­i­cal tech­ni­cians had to act like body­guards to shield Kaisy from the crowds.

Her Face­book page, Kick Butt KK, at­tracted thou­sands of fol­low­ers. All this lasted 21 months. Kaisy died on Mon­day. “Mom, I can’t do this any­more,” she told 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 Knott 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 Make-A-Wish stuff. No trips to Dis­ney World or Paris.

They dropped ev­ery­thing to go to Ocean City on a Thurs­day when they didn’t have ho­tel reser­va­tions. They swam, pad­dle boarded, got Star­bucks when­ever she asked, made 52 para­cord bracelets when she be­came ob­sessed with mak­ing them.

“We were look­ing for qual­ity,” she said. “And the Mex­i­can treat­ments were less in­va­sive and gave her qual­ity.”

Knott sup­ported a re­cent bill to raise aware­ness of DIPG, and even though it makes her un­com­fort­able to min­gle in these cir­cles, she’ll keep do­ing it. Be­cause be­ing un­com­fort­able is what Kaisy taught her to do.

“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 Mex­i­can med­i­cal school stu­dent named Cae­sar who took care of Kaisy when they were there for treat­ments.

And on Wed­nes­day, Kaisy did it again.

It took Knott 15 min­utes of stalling to go into the fu­neral home. She threw up twice out­side.

“I said: ‘You’re do­ing it again, Kaisy. Mak­ing me do some­thing I never thought I would do,’” Knott said. “Then I busted out laugh­ing.

“The fu­neral di­rec­tor looked at me like I was nuts,” she said. He was al­ready freak­ing out be­cause the fu­neral is go­ing to be too big for his lit­tle par­lor, and he had to move the whole thing to the big­gest space in their tiny town – the lo­cal fire hall.

And then Knott had to ex­plain to the ner­vous di­rec­tor that for 13 years, Kaisy chal­lenged her mom. And dang it, even in death, she was do­ing it again. Knott has a deep fear of bod­ies, of the cold, limp feel­ing of death.

But Kaisy liked her hair braided, only by mom. And Knott knew that Kaisy wanted her hair done, one last time, only by mom.

So af­ter puk­ing and laugh­ing, she walked up to her child’s body – clothed in the T-shirt, shorts and tie-dye Crocs she put out for what she hoped would be her first day of school this week – and braided her hair.

KAISY KNOTT

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