Using every minute

Kayla Perry has helped raise $465,620 for pediatric cancer research in less than a year. 

When a doctor told Kayla she should experience all she hoped to experience before cancer took her life, the 20-year-old Hoover resident decided to dedicate her time to raising money for research.

“Obviously I have a pediatric cancer, so it’s close to my heart because of that,” Kayla said, “but I’ve also had lots of friends who were waiting for a trial to open up and passed away, or waiting for some piece of the puzzle to come in to it to get a certain drug. And it’s heartbreaking to see that there are potential answers out there, but the funding for research isn’t there.”

Kayla’s mother, Christen Perry, said it takes a special person to put others first when they’re going through what Kayla is going through.

“She really knows that that study most likely won’t help her, but moving forward will help other people,” Christen said.

In 2013, Kayla was diagnosed with neuroblastoma, a pediatric cancer. After more than a year of treatment, doctors told her the cancer progressed. Instead of eradicating her cancer, the plan shifted to controlling it – and her own plan shifted to help bring answers to others.

“The biggest trial that I’ve had since being diagnosed is research,” Kayla said. “There have been so many times, including this week, where my doctors are going, ‘I don’t know. There’s not a best answer,’ because there’s just not enough research to show what does and doesn’t work.”

Trials often have difficulty even getting enough funding to start. A lot of the time, funders are waiting for someone else to support research before giving their own money. Even then, funding can fall away and stop any progress.

“There are people out there trying to find more effective treatments. We need more people to get on board to help them do that,” Christen said. “When these studies aren’t funded or can’t get enough funding for them, they just stop. They can’t go any further.”

To help raise money, Kayla started Open Hands, Overflowing Hearts, a nonprofit dedicated to raising money for childhood cancer research. She has worked with the nonprofit while attending Auburn University, where she just finished her freshman year. Kayla balanced her college classes, final exams and cancer treatments while still holding a big role in the nonprofit. 

She admits it was difficult but also attributes the success of Open Hands, Overflowing Hearts to a great team. 

“I’ve not had to do any of it on my own,” she said. “We have a great board, we have a wonderful director of development who saves my life half the time, and it can be stressful at times, but overall it has been really cool.”

Since her diagnosis, Kayla has learned to value the time she has and work to make the most of it. 

“I’ve learned a lot. And while I always say I’d wish it on nobody, I do think that I’ve grown a lot in the time since I’ve been diagnosed. And it has changed the way I look at a lot of things,” Kayla said. “Specifically with time, I realize that every second is important. That’s not to say I never get lazy [or] I never procrastinate, but I do value every minute I have.”

Her family also faces the importance of time and the moments they share. 

“The five of us together, it’s just really changed our perspective on life,” Christen said. “We’re doing things that are special, making memories, focusing on other people and things that will help other people.” 

When it comes to treatment options, each decision influences the time they have as a family. By raising money for research, they hope future families in a similar situation will have fewer questions and more answers.

“Our decisions that we make about our next type of treatment could mean the difference between three months or seven months or a year,” Christen said. “Every minute matters, every month matters.”

Open Hands, Overflowing Hearts has fundraising and awareness events throughout the year, including its biggest event, Answer to Cancer. The December 2014 event attracted almost 1,000 attendees and raised $125,000. The event marks the culmination of 100 Ways, 100 Days, a campaign that asks teams, individuals, companies and communities to find their own ways to raise funds . 

While last year’s events attracted a lot of support, Kayla hopes this year will go even better thanks to more planning and awareness. So far, Kayla said support from the community has been overwhelming and raised large amounts to donate to research.

But Kayla’s goal doesn’t stop at awareness and events. She wants everyone to understand the need for backing, but also the need for action.

“I want people to know how much pediatric cancer research needs to be funded,” Kayla said. “In the past few years, I think there’s been an increase in awareness of pediatric cancers, which I think has been very good. But at the same time, awareness on its own does not fix anything.”

To donate, visit openhandsoverflowinghearts.org/donate or like them on Facebook to stay up to date on events.