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Jackie Kluesner helps others fight disease

BY CODY GOODWIN | FEBRUARY 04, 2014 5:00 AM

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Jackie Kluesner’s home, in Farley, Iowa, around 90 minutes north of Iowa City, houses more cardinal and white than black and gold. She’s a young, rabid Badgers fan — “They’re just totally better than the Hawkeyes,” she said.

Jackie is a fan of math, too, but multiplication timed tests can be difficult sometimes. She isn’t the biggest fan of spelling, either. But for an 11-year-old, Jackie knows how to spell some big, formidable words.

Sitting on her living-room couch, wearing mismatched socks, she shows off her ability to spell a word that shouldn’t be in a fifth-grader’s vocabulary.

“A-S-T-R-O-C-Y-T-O-M-A,” she said. “Word of the day.”

She paused for a moment and looked at her mother, who was sitting next to her. “I’m not going to spell that really long, ugly word.”

That really long, ugly word, which Jackie pronounced, was oligodendroglioma — again, another word that probably shouldn’t be in her vocabulary.

But things change when you get diagnosed with cancer.

• • •

On June 12, 2013, Jackie and her family took a trip to Iowa City. They were scheduled for an evaluation at the University of Iowa Children’s Hospital. Jackie’s mother, Vicki Kluesner, didn’t think too much of it — they planned to shop once they were finished.

But something went awry. They met with UI neurosurgery Professor Arnold Menezes. After a time, Menezes asked that both Jackie and her older brother, Luke, to leave the room. He needed to speak with Kluesner and husband Scott Kluesner.

Vicki Kluesner remembers nearly everything about that day. She remembers what everybody was wearing. She remembers the chilly temperature in the room. She remembers how Menezes was very prompt and direct — Scott Kluesner related the moment to someone ripping off a Band-Aid. Jackie had cancer.

“He said, ‘You have 20 minutes to pull yourself together,’ ” Vicki Kluesner recalled.

Jackie’s official diagnosis was spinal cord astrocytoma and oligodendroglioma, a rare form of cancer that normally occurs in people near the ages of 50 and 60. Menezes recommended surgery immediately. He also advised not telling Jackie, or Luke, about what was wrong.

“They had said that if she didn’t get the surgery in two to three weeks, there was a very real possibility she could be paralyzed from the waist down,” Vicki Kluesner said, noting Menezes had a sense of urgency about him.

Eight days later, Jackie and her family returned to Iowa City for surgery. Menezes led a team that operated for more than 10 hours to remove as much of the tumor as possible — which had spread across 10 vertebrae in Jackie’s spine.

What followed was 28 weeks of radiation and continuous rehab, the latter of which involved trips to Cedar Rapids. Jackie had to regain control of her body below the waist, which included relearning to stand and walk — something she can do very well today.

Her first goal, though, which she still chuckles at, was to just learn to go to the restroom on her own again. But even then, the first step isn’t always the hardest.

When asked what the toughest part of the process was, Jackie thought for a moment, and then said, “Not being at home.”

• • •

One night in September, Vicki Kluesner snuck into Jackie’s room while she was sleeping. Jackie had lost a few teeth, so Kluesner was playing the role of tooth fairy.

As she slid a few dollars under Jackie’s pillow, she found a note to go along with the teeth. Vicki read the note and began to tear up.

The note read: “Dear Tooth Fairy, the money you give me will go to Iowa City for children fighting cancer. So can I please get a little more?” Jackie signed it at the bottom.

“The ‘tooth fairy’ came back into the bedroom and told me, ‘You have to read this,’ ” Scott Kluesner said. “And then [she] asked me to pull out my wallet.”

This was the beginning of “Jackie’s Cause” through the Iowa Foundation, a fundraiser that sends every last penny to the UI Holden Comprehensive Cancer Center to help find a cure for both astrocytoma and oligodendroglioma.

“I’m like, I’m going to get three bucks from the tooth fairy,” Jackie said. “What am I supposed to do with three bucks?”

Jackie initially handed the money — which totaled $86 after her birthday a short time later — directly to Menezes, whose eyes became watery. He accepted it, saying, Scott Kluesner related, that her $86 will mean more to him to any other donation he’s ever received.

“Dr. Menezes said, ‘She’s got more work to do,’ ” Scott said. “She still has great things to do.”

•••

When Jackie was in the pediatric intensive care unit, one of the nurses reminded the Kluesner family to come to the front desk every day to get two tokens to the vending machine. They were courtesy of Dance Marathon.

Later on, when Jackie was going through radiation, one of the workers who assisted Jackie asked Vicki Kluesner if she ever thought about sharing Jackie’s story with Dance Marathon.

A couple of phone calls and emails were traded and the process began to pick up steam. The Kluesners started to learn more about it and were enthralled by the idea. They jumped on board.

“All of these college kids are taking a break from their partying for a weekend and doing this Dance Marathon, and that’s really neat,” Vicki said. “And if you can set an example to your own kids about these kids doing something to give back, then maybe we should be a part of it.”

Leading up to the Big Event, Jackie continues to rehab. She visits Iowa City for evaluations on a regular basis. Her cancer hasn’t gone into remission, and that’s a little unsettling for her mother and father.

Still, they’ve had more than enough help through this entire process — a lot of which has come from Jackie. She oozes confidence, and that amazes her parents, even though they refer to her future as “The Big Question Mark.”

That doesn’t stop Jackie. She said after the surgery, she didn’t feel like the cancer was in her back anymore, and because she couldn’t feel it, it was no longer there in her mind.

“It’s not in the room,” Jackie said of the cancer. Back on the couch, she turned and stared right at her father. “It’s gone.”

Scott smiled. “And that’s the attitude we’re going to have.”

If you’d like to donate to Jackie’s Cause, gifts should be directed to the UI Foundation, P.O. Box 4550, Iowa City, IA, 52244, or made online at http://www.uifoundation.org/jackiescause to support the Directed Cancer Gift Fund.


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