University of Iowa Dance Marathon celebrates 30 years of fighting pediatric cancer

Amy Johnson remembers, in photographic detail, the entire sequence of events on the day her son, Connor Muston, was diagnosed with leukemia.

While picking up her 2-year-old son from day care in 2002, the elementary school teacher in Keokuk noticed what looked like an unusual rash. Doctors at clinics said it was viral, prescribed antibiotics and sent them home. After no improvement for a few days, Connor woke up one morning struggling to breathe.

After blood tests, their emergency room was swarmed with staff who prepared him for a Life Flight to the University of Iowa Stead Family Children’s Hospital. Later, she would learn his blood platelets were down to 11,000 — far below the norm around 149,000. The body’s organs start shutting down at around 10,000.

By 9:30 that night, the doctor delivered the diagnosis, triggering the shutter that recorded a snapshot in the mother’s mind — the chill that traveled down her spine, where everyone in the room was standing and how the doctor’s lanyard laid on his chest. Tests later revealed that his bone marrow was 97 percent cancer cells.

At seven months pregnant, the diagnosis had her struggling to breathe, too.

“When we got to the floor, we saw these little baldheaded kids running around playing. But it still didn’t click where we were,” Johnson said. “I didn’t make the connection that my kid might have cancer.”

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But Muston, now 24, doesn’t remember the spinal taps, chemotherapy infusions or gritty details from the years of arduous treatment. He remembers nice people coming in to play with him, giving him Legos and bringing joyful memories to a setting often ill-equipped for positive reinforcement.

“Here is this kid getting his body flooded with toxic chemicals, and he’s having the best time,” Johnson said. “It’s like (volunteers) knew more about what they needed to do around him than I did at that point.”

Twenty-two years later — most of them in remission — the University of Iowa Dance Marathon’s annual 24-hour Big Event is what Muston looks forward to every year. After making lifelong friends with other families on the hospital’s 11th floor, he’s never known a life without Dance Marathon.

“I was always excited for the Big Event, to have fun with everyone else, knowing that there are people who care about childhood cancer awareness,” said Muston. “It made me feel so happy that even though I’m in the hospital away from my hometown, I can still interact with other people.”

“I can’t really explain how we got through it. Dance Marathon was how we got through it,” said Johnson. “That was our light.”

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30th Anniversary celebration

Now, 30 years after the UI’s first Big Event in 1994, hundreds are coming together to celebrate more than 1,340 families like his who have been helped by the nonprofit organization.

In three decades, the student-run organization has held 732 Big Event hours, 29 Big Event final tote board reveals and raised more than $34 million.

Now, in their second year since returning to in-person events after the pandemic, they’re hoping to stomp out childhood cancer even more on the dance floor. After raising $1.147 million last year — slightly more than they raised in their 15th year — they hope to up the ante and return to pre-COVID fundraising levels.

“The goal every year is to raise more than the last, to keep pushing the boundary,” said Sushma Santhana, UI senior studying biomedical engineering and executive director of the Dance Marathon. “That’s the mindset we’re going forward with.”

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As they approach the milestone, Dance Marathon looks back on 30 years of growth. As they look ahead, they hope to showcase that their organization is about more than their signature annual event.

Santhana said they are hoping to bring the number of dollars raised back to where they used to be pre-pandemic.

“We looked back at past years when they raised $3 million-plus. We’re hopeful,” she said.

How Dance Marathon helps families

Day to day, Dance Marathon’s student volunteers put in hours that make an impact in less flashy ways.

First, there’s the creature comforts that start at Day One.

When families experience the whirlwind of events and emotions that follow a life-threatening diagnosis, the last thing they’re thinking about is how to pay for parking, gas and meals during back-and-forth travel to Iowa City. But volunteers often introduce themselves bearing gift cards and help to ease the painful logistics many families face.

Other times these students plan outings to the zoo, hockey games or museums to help children and their families feel normal again with people going through the same experience.

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But the biggest help is often just the student volunteers’ presence, families say — giving parents the chance to take a break or get a meal.

“Any time we’re at inpatient, Adeline asked, ‘Can someone from Dance Marathon come and play with me?’” said Clear Lake resident Chris Lovell, whose kindergarten-age daughter, Adeline, is now in the maintenance phase of treatment. “Students would be there multiple hours each day.”

While brutal treatments can detract from the innocence of childhood, he said volunteers helped shield against the loss as she gained a resiliency she’ll carry through her life.

They remain grateful for their family representative, Maddi Smith, who still calls and visits Adeline today — now practically part of their family. Chris Lovell gives back through regular fundraisers every year in Clear Lake, and by running in the Chicago Marathon to raise money.

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For the Dekker family in Bellevue, their representative was able to give the care that a flood of supportive family members and friends could not after the diagnosis.

“Racheal had a lot of experience dealing with cancer,” said Nikki Dekker, whose son Kyden was diagnosed with cancer. “She said it was OK to not be OK.”

When their son, Kyden Dekker, had to shave his head to eliminate the itch of hair loss from cancer treatments, she came in two minutes later with hats. When Nikki Dekker had a miscarriage several months after Kyden’s diagnosis in 2020, Racheal Niensteadt bought her a gift to let her know she was seen.

Families with more than one child said that UI students made sure that each patient’s sibling was given attention during visits, too.

“It was nice to see all these young people care about people they don’t really need to care about,” Jon Dekker said. “What they bring to the kids is joy and love.”

As parents, a child’s cancer diagnosis can leave them devastated. But through treatment, they say Dance Marathon volunteers bend over backward to leave them speechless with gratitude.

Comments: Features reporter Elijah Decious can be reached at (319) 398-8340 or elijah.decious@thegazette.com.