Young University of Iowa cancer patient fights for herself and others

Girl's optimism, desire to help others moves UI Foundation to create fund

Vanessa Miller
Published: December 22 2013 | 3:30 am - Updated: 29 March 2014 | 1:09 am in
Print Print

On a night in September, following an agonizing few months that saw her daughter diagnosed with a rare form of cancer, Vicki Kluesner sneaked into the 10-year-old’s room posing as the tooth fairy.

Jackie Kluesner had lost three teeth, and her mom came prepared with $3 – $1 per tooth. But when Kluesner slipped her hand under Jackie’s pillow, she found more than teeth. She found a note.

“Dear tooth fairy,” it read, “the money you give me will go to Iowa City for children fighting cancer. So can I please get a little more?”

“I was like, ‘You have to be kidding me. You are killing me,’” Kluesner recalled. “This child has been to hell and back. She has experienced things I only wish I could have done for her. And she still is thinking about other people.

"She doesn’t have to. She can be selfish. But she’s not doing that.”

That night, Kluesner returned to her daughter’s room with $10. The girl’s grandparents matched it, and on Jackie’s birthday a week later, the girl announced that all her gift money also would go to the University of Iowa Hospitals and Clinics.

At a recent appointment, Kluesner handed money she’d raised to her doctor – UI neurosurgeon Arnold Menezes – and asked him to “use it to help kids like you have helped me.”

“He is prim and proper – he is not warm and fuzzy,” Kluesner said. “But he got this envelope with the donation money and a smiley face on it … and he got these big tears in his eyes.”

Jackie is one of many children over the years to make one or repeat donations to the UI in the form of cash, gifts or time. The UI Foundation works with child donors, as it does with adult donors, to find the right fit for their contributions – be it a specific hospital or university department.

The UI Foundation last week established a fund for Jackie – called Jackie’s Cause – that will go to the UI Holden Comprehensive Cancer Center. Jackie has big plans to grow that fund, possibly through annual fundraisers aimed at learning more about the rare tumors she’s fighting – spinal cord astrocytomas and oligodendrogliomas.

“In her mind, she is thinking, ‘They don’t know what is going to happen with me. But what if we can buy a microscope, and they can learn more?’” Kluesner said. “She knows there needs to be research. She knows there has to be a better way.”

Jackie’s story

More than a year ago, Jackie’s back and hips began to hurt. The pain would wake her up at night.

Her parents noticed a change in how she ran, and that their normally active 10-year-old preferred to be inside, rather than out.

The family, of Farley, took Jackie to a nearby doctor in Dubuque, who recommended keeping her out of sports a few weeks. They tried physical therapy and saw a chiropractor.

But no one could identify the problem. And the pain got worse.

So Kluesner asked to see a specialist, and Jackie had an MRI on June 7. Five days later, they were in Iowa City to meet with Menezes – although they didn’t know exactly why.

“I remember what I was wearing. I remember what my husband was wearing. I remember the room temperature,” Kluesner recalled. “I remember saying to him, ‘How do you know it’s cancer? You haven’t done any blood work.’ And he said, ‘I’ve never seen one that’s not.’”

The type of cancer Jackie had usually shows up in the fifth to sixth decade of life and in the brain, Kluesner said.

“Jackie was 10, and it was down in her spinal cord,” she said. “That, and the fact that it’s a combination of two types of cancer, makes her a rare specimen.”

Menezes said the family could get a second opinion – although he said that few surgeons would attempt to operate and that Jackie had three weeks until she would be completely paralyzed.

“Life was going along, and all of the sudden it just stopped,” Kluesner said. “There is no way to prepare yourself for how you are going to react. We realized we had absolutely no control over anything that was going on and going to happen.

“... Now, every morning, I get up and cancer is in the house with me. And it gets in the shower with me. And it goes to school with my daughter. And it sits at our supper table. There is no place to get away from it.”

Her mind has gone to places she never imagined.

“I’ve had to ask, ‘Is she going to be here for her birthday? Is she going to be here for Christmas?’” Kluesner said. “We have had to figure out what our new normal is. And it’s been very challenging.”

When Menezes first told Kluesner and her husband, Scott, about the cancer, he asked them to lie to Jackie and her 13-year-old brother Luke.

“He wanted us to keep her 10 as long as we could,” Kluesner said, “because as soon as she learned about this, she’d no longer be 10.”

So that’s what they did. The couple just told Jackie that she needed surgery. Menezes said the quick 10-year-old would figure it out soon enough.

“And that’s what happened,” Kluesner said.

On June 20, a team led by Menezes operated on 10 of the vertebrae in Jackie’s spine to remove as much of the cancer as possible in a procedure that lasted more than 10 hours. The second day after surgery, Jackie asked a nurse if she had a tumor.

The nurse went and got Kluesner to answer the question.

“I went into the room, and I told her in her terms,” Kluesner said.

Jackie asked if it could be the type that begins with a “B” – benign. Kluesner said probably not.

She asked if they had removed it all. Kluesner said they got as much as they could.

Jackie asked if she could use her own hair to make a wig – if she had to go through chemotherapy.

“From day one, she has been very positive,” Kluesner said.

But Jackie did have a moment of weakness in the hospital, Kluesner said. In response – and in desperation – Kluesner reached for a napkin and wrote the word “impossible.” She asked Jackie what it said, and then she drew a line between the “im” and the “possible.”

“Now what does it say?” Kluesner said.

“I’m possible,” Jackie said.

“You are a miracle,” Kluesner told her. “There are people ... who don’t think it’s possible that you are here and that you are moving your toes.”

That became the family’s mantra.

“Impossible is nothing – the word itself says, ‘I’m possible,’” Kluesner said. “She has taken that and run with it. She’s always been strong willed. Now she’s saying, ‘We can do this.’”

Jackie went through 28 weeks of radiation and spent six weeks in a rehabilitation facility learning how to stand and walk again. Today, Jackie can run with the help of ankle and foot supports, but her mom said Jackie’s prognosis is unclear.

It’s not the type of cancer from which you can be in remission, she noted. Jackie will have an MRI every three months indefinitely to make sure the tumor is not returning.

If it does, chemotherapy is the next step.

“We don’t know how it’s going to play out,” Kluesner said. “There are no answers for us.”

Kids giving to kids

But Jackie said she hopes there will be some day.

“I want it to be as well known as breast cancer,” Jackie said.

Her family has set up a Facebook page to provide updates on her condition and on her fundraising efforts — https://www.facebook.com/JackieKluesnerUpdates. As to why and how she’s maintained her optimism and selflessness, Jackie said simply, “Positive income, positive outcome.”

The desire for children to help others is strong and ever evident in their seemingly constant donations to the university, said UI Foundation spokeswoman Dana Larson.

Earlier this month, a student from Mason City organized a hat day at school and raised $90. A school bus full of kids in October pitched in for a donation to the UI Children’s Hospital.

One former cancer patient – Cameron Christiansen, 13, of Muscatine – visits the UIHC ever year with hundreds of toys for children just like him.

Judi Connor, director of C&S Pageant Systems Inc. in Muscatine, annually guides the children who participate in her program to donate more than $1,000 to area hospitals, including the UIHC.

Larson said child donors from across the state hold toy and penny drives, pie-in-the-face contests and other events to help support UI patients, doctors and researchers.

“Kids giving to kids happens every week at the UI Children’s Hospital,” she said.

How to give:

The University of Iowa Foundation is the preferred channel for private gifts to the Holden Comprehensive Cancer Center. Online gifts to the center through Jackie's Cause can be made at www.uifoundation.org/jackiescause.

  • Credit card gifts also are accepted by calling 800-648-6973, ext. 895.
  • Mailed donations can be sent by mail to the UI Foundation, P.O. Box 4550, Iowa City, Iowa, 52244-4550, with a note that it's to support the directed cancer gift fund of Jackie’s Cause.

 
 

Have you found an error or omission in our reporting? Is there other feedback and/or ideas you want to share with us? Tell us here.



Featured Jobs from corridorcareers.com