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As an infant with cancer, her funeral was planned | 20-year-old college student talks her survival, successes

Diagnosed with stage 4 liver cancer at 8 1/2 months old, her parents were told to start planning her funeral.

GALVA, Ill. — Lauryn Kuehl, 20, turns 21 years old in 15 days, but shortly after she was born, doctors told her parents to start planning her funeral.

"My mom picked everything out from the casket and the flowers to the church and pastor and even the dress I was to be buried in," Lauryn told audience members at St. Ambrose University's 12th annual Dance Marathon.

At 8 1/2 months old, she was diagnosed with stage 4 Rhabdoid Tumor of the Liver, a rare form of cancer that develops in the liver then quickly spreads to other parts of the body if left untreated, according to Johns Hopkin's Children's Hospital. It can also start in the kidney and the brain, and usually affects babies and toddlers.

Credit: WQAD
Lauryn Kuehl speaks on stage to audience members at St. Ambrose University's Dance Marathon in Davenport about her life as a childhood cancer survivor.

But Lauryn's parents, Jason and Renee Kuehl, didn't give up on their second daughter even after being told the life Lauryn would have to face if she survived. 

So they elected to give her a chance at deciding her own fate, and Lauryn went through surgery when she was three.

"As I tend to do, I shocked everyone," Lauryn said. "After eight rounds of chemo strong enough for a grown man, 13 rounds of radiation, and a 15-hour surgery to remove half my liver, it's been three years since the hospital has declared me cancer free."

Lauryn was one of the lucky 483,000 childhood and adolescent cancer survivors according to the National Institute of Health in a 2018 paper. But while her battle with cancer waned, other battles kept popping up.

Credit: WQAD
From left to right: Jason Kuehl, Lauryn Kuehl, Renee Kuehl. Taken April 22, 2023.

"This is a part where I struggled with, survivor's guilt. Every single day, knowing in my head that I was supposed to die and I'm still alive," Lauryn said.

As a child, her mom described her as quiet to strangers but outgoing once they earned her trust. But even then, Lauryn struggled to fit in.

"It was hard," Renee told News 8's Collin Riviello. "I mean, it was hard at night when she would come home and cry because she said they wouldn't let her join the softball team or the volleyball team. Or the day she would come home and she couldn't go to a school dance because she was sick."

Lauryn says she was ostracized for being sick all the time, a side effect of her medications. She showed News 8 a few of the bottles of medications she has to take every day so she doesn't die.

Credit: WQAD
Lauryn says she takes dozens of pills daily. Some are so her liver doesn't crystalize while others are for constant headaches.

"This isn't even half of it which is very sad to say because as a 20-year-old, no 20-year-old should have to take this many pills," Lauryn said.

And Lauryn isn't the only person who faces this battle. According to the National Cancer Institute, it's estimated there are more than 16 million cancer survivors

"She was in the hospital a lot," Renee said. "And because of that, it felt like she got punished. It was, it was just hard. It was heartbreaking to see as a parent because you want your child to experience high school. She never got to."

The hospital visits and medications didn't just take a toll on family members, it also hit their wallets.

"I remember the day I got the mail and I got an envelope," Renee said. "It was probably about two inches thick and I'm like, 'What is this?' and I opened it up. It was a bill. It was over $2 million."

Fortunately for the Kuehl's, they say much of it is covered by insurance, but Lauryn estimates that total probably rose at least a million in the years after her liver surgery. 

But Lauryn says she wants to live life to the fullest right now.

"It's a lot of ups and downs," Lauryn added. "Mainly downs. But you hit milestones and it makes it all worth it."

Milestones like being inducted into Black Hawk College East Campus' Alpha Phi Beta Chapter of Phi Theta Kappa International Honor Society for two year colleges on Sunday, April 23.

Credit: WQAD
Childhood cancer survivor Lauryn Kuehl, 20, was inducted into the Phi Theta Kappa honor society on April 23, 2023 at Black Hawk College in Kewanee.

Her parents also noticed Lauryn's demeanor change from a decade ago, even though she still faces the same daunting battles to continuing breathing.

"Everyone's like "how's Lauryn doing?," Renee said. "She's thriving. Thriving at school. Like you have no idea how much she's thriving."

Lauryn is currently pursuing her Associates in Agribusiness Management at Black Hawk College.

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