By John Halverson
The Deneckes were a typical family with four kids. Busy but not as busy as they would become. Touched by emotion but not nearly as touched as they would be. Giving but not nearly as giving as they would become.
Then, in 2013, their 7-year-old daughter, Keegan, was diagnosed with Acute Lymphoblastic Leukemia.
Keegan’s in remission today, but her ordeal led to the creation of Kisses from Keegan, a charity that has helped hundreds of other families facing pediatric cancer. “We feel like we took something awful and turned it into something good,” says Carey, Keegan’s mother.
“While Keegan was in treatment, we were fortunate enough to meet some other amazing cancer warriors and their families,” says Keegan’s father, Paul. “We were able to witness a few fighters ring the bell, signifying the end of treatment, but we’ve also become friends with some families whose child lost their battle.”
Keegan woke up one morning and said her neck hurt. Carey, noting that Keegan was prone to dramatics, thought her daughter just didn’t want to go to school. “So, I tough-loved it and told her she had to go,” Carey recalls. “I thought it was drama.”
But the school nurse called three times and made a makeshift sling for the girl. Finally, Keegan was sent home where Carey put her down for a nap. When they had a hard time waking her for dinner, they knew Keegan was really suffering. “She couldn’t even sit up,” Carey explains.
There was no trauma, no reason for this unusual behavior. They took Keegan to the walk-in clinic at Aurora Health Center in Lake Geneva, where she had a blood test done. She was put on antibiotics. The next day the pediatrician called. “It’s never a good thing when a doctor calls your house,” Carey says.
The doctor said he needed to see Keegan “within the hour.” The test showed 24% of her blood was made up of cancer cells. They went to Children’s Hospital in Milwaukee the next morning. “We still thought we were going there to rule cancer out,” Carey says.
Little did they know that Children’s Hospital would become their home away from home for three years as they went back and forth for treatment.
“In the beginning it was a whirlwind,” Paul explains. “The doctor there said I know you’re not going to understand anything. I know you’re in a fog. If you have a question and you ask it a thousand times and still don’t get it, ask it a thousand more.”
What are the odds of meeting professionals who’ve also had cancer in their background? Pretty high apparently. From the nurse they met on one of their first visits who lived through leukemia to many others along the way, “There are a lot of people with connections like that,” Carey remembers.
During her treatment, Keegan went from 40 to 59 pounds in a month from the effects of steroids. She had 19 spinal taps. She had to learn how to walk again. She had blood clots, kidney stones and a seizure. At one point, Keegan gave herself shots, “so she felt she had control over something,” Carey says.
Paul recalled that the hospital gave them a list of side effects listing them in categories from minor to rare, but serious. The doctor told Keegan, “You don’t have to get all the serious ones.”
The journey was made all the more difficult because Paul’s mother and brother-in-law also had cancer during that period. Since then, they both died.
Paul’s brother-in-law and Keegan bonded. They called each other “chemo buddies.”
“My brother-in-law said Keegan was a source of strength for him,” says Paul. But her chemo buddy succumbed to the disease.
When Keegan’s grandmother died, Keegan asked a natural question. “You told me that the cancer I had they could get rid of,” Keegan asked. “Why couldn’t they get rid of grandmother’s?”
Keegan didn’t talk about the possibility of her own death until much later during a conversation with her mother, then she confessed, “I sometimes was afraid I might die but I didn’t want to tell you,” Keegan said.
After 2 1/2 years of treatment, Keegan no longer makes regular trips to Children’s Hospital as a patient. Now, Keegan and her parents go there to help others.
As for the future of Kisses from Keegan, “We want to remain grassroots,” Paul says. “This is us. We don’t need a lot of fancy dressing.”
During treatment a girl brought the family a gift basket. That small gesture sparked something in Carey and Paul. “I thought when we get in a position to give back, we would,” Paul says.
They started small. “Our oldest raised money and did a lot of stuff at school,” Paul explains. Then Paul, who coaches youth football, brought in that community. “The football community was amazing.” he adds.
He tapped friends, old and new, and expanded Kisses from Keegan from the Genoa City area, where the Deneckes live, to all of southeast Wisconsin. They’ve helped hundreds of families in a variety of ways since. They’ve even helped with home projects. “We’re not pigeonholed to one thing,” Paul says. “We help in different ways. Sometimes it’s just a shoulder to cry on.”
Often times it’s a trip. They’ve sent families to places like Chicago and Wisconsin Dells. Once, the foundation arranged a hunting trip for a father and his son. “We want to make sure the whole family is involved because we know it involves the whole family,” says Paul.
They make frequent trips to Children’s Hospital to bring toys and other gifts. “When you get there it’s a place you don’t want to be,” Carey says, recalling Keegan’s time in the hospital. “But you meet these people and they become your family.”
They fund the foundation through fundraisers. They’ve had traditional fundraisers like one at Culver’s in Lake Geneva and fundraisers as diverse as an event hosted by the American Firefighters Motorcycle club.
Kisses from Keegan won $5,000 from a promotion put on as part of Restaurant Week in Lake Geneva last year. They competed with other charities for the award. “I’m still shaking. Every charity was deserving,” Paul says of the charity check.
“It’s nice to see how much good is out there,” Carey adds. “You don’t always see that.”
A CHANCE MEETING
When Keegan started treatment, she made a comment that was both touching and humorous. “At least I don’t have hair cancer,” she said, thinking the treatments that cause patients to go bald is a cancer itself.
Eventually, Keegan lost her hair, too, but it set up a beautiful moment when they were eating at a restaurant and people were staring at her bald head. Carey comforted her. “They’re not staring at you because you don’t look pretty,” she said. “It’s because it breaks their heart to see.”
An elderly woman walked up to them and gave Keegan a pair of earrings, saying, “I just finished my fight.”
When they were to ready to leave and were about to pay, the waitress said, “Your meal has been taken care of.”
“The whole experience changes you,” Paul says. “We’ll never be the same. I wouldn’t want to be the same.”
Some people just want to “burn the records,” Paul adds. “I get that. But for me, I don’t know how you couldn’t do something.”
How will Keegan do in life? Paul told the Lake Geneva Regional News in 2017, “We saw how strong she is, and what she’s capable of, because she’s been to hell and back.”
“She’s a redhead,” Carey adds. “She has fire in her veins. She’s very determined. She’s going to do great things.”
For more information, upcoming fundraising events and other news about the foundation, visit kissesfromkeegan.org.