UI Dance Marathon volunteer pulls from experience as cancer sibling

IOWA CITY — As family liaison director for the University of Dance Marathon student organization — which over its 31 years has raised more than $39 million “for the kids” — Amelia Earley has become good at listening.

Now a 21-year-old UI senior, Earley meets the families where they are — both literally and emotionally — at low moments in hospital hallways or celebrating at trampoline parks, zoos, or the annual Big Event, which this month raised another $1.69 million.

“Every dancer has a story,” Earley said. “Every family obviously has a story. Every staff member on Level 11 has a story. Everybody has a story, and Dance Marathon is part of it for everyone involved.”

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Of course, Earley has a story too. And while she doesn’t mention it or talk about herself when connecting with the families she serves, she pulls from it a level of understanding and empathy developed over her formative years as a big sister to a cancer patient.

“My brother was diagnosed with a brain tumor in July of 2014,” Earley said. “He was seven, which means I was 10.”

The first sign something was off came one day when her brother, Mason, was picking up Legos with his mom.

“There was a whole pile he missed in his peripheral,” Earley said.

So their mom mentioned it during Mason’s next eye appointment, and the optometrist was concerned enough to send him for an MRI in Chicago — near their hometown of Wilmington, Ill.

Mason was diagnosed with a type of brain tumor known as an optic-hypothalamic glioma — sending him through 12 to 13 rounds of chemotherapy over the years.

“Once he was diagnosed, he was pretty much on and off his treatment until just a couple of years ago,” Earley said. “He’s done so many rounds of chemo because they can't do radiation, and they can't surgically touch it at all because of where it's at in his brain. So they were kind of just keeping it stable.”

Throughout the treatment, according to Earley, the tumor would shrink and grow and fluctuate — primarily impacting vision in his left eye.

“He can't quite see out of it too well,” she said. “And his right eye, I think, is starting to deteriorate a little bit.”

But having endured treatment for a decade — through his grade school, middle school, and high school years — Earley said, “He was kind of just over doing treatment that wasn’t fully getting rid of the tumor or shrinking it enough that it was changing much.”

So Mason, now 18, is off treatment and “stable enough to not worry about it too much.”

‘That’s called a pediatrician’

Because Earley is three years older than her brother — as opposed to her sisters who are 10 and five years older than her — she experienced the ups and downs more acutely. She watched her brother and her parents navigate the highs and lows, and experienced some herself.

“I remember the first time I noticed, it was that year — right after the summer he got diagnosed — I was in an art club, and I did end up having to drop that until my mom convinced the teacher to have it on a different day — just because it was on chemo day and nobody would have been able to pick me up from school.”

Earley said it became hard to stay in sports and have friends over.

“I usually had to go somewhere else, just because they couldn't risk him getting sick,” she said. “Luckily, my best friend at the time lived right down the street.”

From a young age, Earley said she wanted to be a doctor — but “only for kids.”

“My mom was like, ‘that’s called a pediatrician’.”

So when Earley — now aspiring to be a pediatric oncologist — started touring prospective colleges, she took note of the UI Stead Family Children’s Hospital.

“And then during my visit, my mom and I went into the Hawk Shop and there was a Dance Marathon sweatshirt in there, and I had heard that Dance Marathon was a really big deal here, but then just the fact that it was big enough for me to hear about it on the tour kind of put into perspective for me how big of a deal it was,” she said. “So that, plus the fact that I want to be pediatric oncologist and the Children's Hospital is right here, and how much I loved Iowa City, it all kind of just came together.”

‘Huge deal to me’

As a freshman, Earley focused on getting acclimated and finding her bearings in a new community. But she signed up to volunteer for Dance Marathon in the fall of her sophomore year — and now serves as family liaison director, with a special connection to the siblings.

“As a sibling especially, it’s kind of awkward,” she said about the need for a family’s focus to fall on the child in treatment — even as siblings experience fear, isolation and change.

Earley noticed the UI Dance Marathon’s focus on the full family right away — upon walking into her first committee meeting.

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“We were writing cards to siblings,” she said. “That was a huge deal to me because none of the organizations I had been a part of had ever thought to do anything for siblings. It’s a small thing that seems like it’s not a big deal to everybody else, but that was the first thing I experienced.”

The UI organization today maintains a “sibling support blueprint” that builds sibling breakouts into family events and offers dedicated sibling activities at the Big Event.

Vanessa Miller covers higher education for The Gazette.

Comments: (319) 339-3158; vanessa.miller@thegazette.com