The boy bigger than life


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Green balloons fill the sky instantaneously in Moline around Aug. 12 every year. The identical balloons leave from the same place, but almost always end up in a completely different location from the one next to it. Some end up in South Bend, Ind., while others float through Ann Arbor, Mich.

Each balloon is released in memory of 7-year-old Gabe Perkins, a boy who’s described by mother Leslie Perkins as one who loved everything bigger than life.

“Everything that had this great big story, he loved,” she said with clarity. “And it’s so great to me … I like to think of him as bigger than life. He is this great wonderful story that we got to be a part of, so it’s fitting.”

• • •

Gabe’s battle began several years ago after he had a very high fever and was vomiting one Saturday night. He was admitted to the local hospital in Moline, where doctors gave him a CT scan and later on found numerous tumors — one measuring roughly 10 centimeters.

“Suddenly, life just stopped very quickly and I saw Leslie and Gabe off in an ambulance to Iowa City,” father Matthew Perkins said. “I drove the car off, and that began the whole process.”

Gabe was set up with a standard treatment plan, but the official diagnosis took almost three weeks, leaving the family sitting on pins and needles waiting to see what was wrong. Gabe continued treatment throughout that summer of 2009 but doctors didn’t see much progress.

The Perkins family sat down with doctors at the University of Iowa Children’s Hospital in late October of that same year and found out there wasn’t any cure and that the current treatment wasn’t working as quickly as they had hoped it would.

After hearing that news, the family decided to try an experimental stem-cell surgery in Madison, Wis.

Gabe’s mother was able to be with him for most of that time, because she was able to take off of work, yet Matthew Perkins didn’t have that luxury and spent most of his weekends traveling back and forth through Illinois to visit the two of them.

“[My daughter] Natalie was 3 months old, and so she kind of went through crawling and standing up and walking with my parents,” Leslie Perkins said as she reflected on the time spent away from the rest of the family. “It was really weird for me, and I had to check in with my mom about her eating schedule.”

“There were definitely tradeoffs with having a baby in that kind of a situation. When you think back, it was kind of sad to think about what we missed.”

• • •

Gabe had three wishes.

He wanted to stay at the Nickelodeon Hotel, he wanted to meet Spongebob Squarepants, and he wanted to get slimed. With a little magic, a lot of slime, and some assistance from the Make-A-Wish Foundation, each one came true.

“I had my head shaved May 31, 2009, right after Gabe was diagnosed, so [when the slime came down], it rolled right off [both of our heads],” Matthew Perkins recalled from the family’s trip right around Christmas that year.

The family also explored Walt Disney World, where Gabe was able to train with a Jedi for the day so he could fight Darth Vader on stage at the end.

“If there’s one thing you knew about Gabe … he was a Star Wars fan,” he said, adding that he was able to share the love of the series with his then-7-year-old son.

And while Gabe and 11 members of his family — including his two sisters — fulfilled his Make-A-Wish trip, they knew the reality of Gabe’s physical condition was unavoidable.

Yet despite the worry and concern, one person in Gabe’s life shared that same kind of larger-than-life outlook on the world.

“My relationship with Gabe was wonderful. We would always tell each other our dreams,” Gabe’s grandmother Imelda Crinklaw, affectionately known as Abita, said. “It was just amazing that a boy his age had such an imagination on anything he wanted.”

• • •

Leslie Perkin’s stem cells were the closest match for the experimental surgery, and Gabe was able to proceed with the 13-hour operation. Doctors were able to remove 95-98 percent.

“He was recovering very nicely, and essentially it was a wait-and-see if the stem cells would start doing the trick,” Matthew Perkins said.

Gabe was supposed to be released from the hospital in June 2010, but he developed a side effect from the transplant where his abdomen and intestines were having a hard time connecting to the stem cells.

“[On June 21 he developed a fever], and we decided to take him to Madison in the middle of the night, and that was the last time he was at our house,” Matthew Perkins said. “Looking back, it was about a month and a half before he passed away.”

And as Gabe became progressively weaker, those who didn’t regularly see him noticed the drastic changes to his physical condition.

“It slowly wore his body out,” Matthew Perkins said. “We looked at him the day before, he looked the same to us, but when people didn’t see him, it was a big change.”

The family decided to move Gabe away from Madison and closer to home. On Aug. 4, Gabe and Leslie Perkins took the two-and-a-half hour ride back to Iowa City to a place they once called home.
Shortly after, on Aug. 11 midday, Gabe lost consciousness for the last time, and his heart beat for the last time at 12:23 a.m. Aug. 12.

“It was one of those things we will never forget … If we had to choose, we wouldn’t have chosen it a better way,” Matthew Perkins said. “This coming April, it will have been five years since he was diagnosed. We can’t believe how time has flown.”

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