Kayla Perry is a sophomore studying nursing at Auburn University, and in so many ways she is an ordinary college student. She loves her picturesque college town, her family, her friends and her dog. She talks a mile a minute and is always smiling. But in so many other ways, Kayla is undoubtedly extraordinary. Diagnosed at age 18 with stage 4 neuroblastoma, Kayla is fighting cancer, raising awareness for pediatric cancers, running her nonprofit, Open Hands Overflowing Hearts, which has raised hundreds of thousands of dollars for pediatric cancer research, and balancing it all with incredible humility and grace. Welcome today’s FACE of Birmingham, Kayla Perry!
Where are you from? Tell us a little bit about yourself and your story.
I was born in Chattanooga, but only lived there for a very short time. We ended up in Birmingham when I was about 7, and have lived there ever since. It’s definitely where I call home.
I graduated high school in 2012, and had been home-schooled, so I was done with school a year early. I ended up deciding that I wanted to do mission work in my year off, so I did a program called Youth With A Mission. I went to Kona, Hawaii, and I trained there for three months, and then I went with a team to Kenya. Toward the end of my stay in Hawaii and when I first arrived in Kenya, I was having really bad nosebleeds and bruising. At first I shrugged if off, but then it had been a month of nosebleeds and bruising, and it seemed like something was wrong. After a few blood tests and a week of going back and forth to the hospital in Nairobi, they said that they didn’t know what was wrong with me, but that I needed to get back to the States to figure it out.
So I came back, just a month into my trip, and got more blood tests done. The first doctor I saw was an adult oncologist, and he called me in after doing a bone marrow biopsy and told me that I have small, round, blue cancer cells in my bone marrow. He essentially said, “I don’t know what I would do with this because it’s a pediatric cancer. We need to send you to a pediatric oncologist.” So I immediately went to Children’s of Alabama. I went through about 15 months of treatment and then went in for my last set of scans—they were supposed to be my all-clear scans—and we found out that I had relapsed in my spine. My doctor sat me down and said, “We’re not curing your cancer anymore, we’re trying to maintain your cancer. So anything that you think is important that you want to do, experience or accomplish, you need to do those things in case this cancer is what takes your life.” I had moved into my dorm in Auburn the day before, and had driven up for my scans. Right after we found out I had relapsed, I drove back to Auburn to start my freshman year.
What inspired you to found Open Hands Overflowing Hearts?
Everyone was asking what they can do to help, and my family and I just decided that we didn’t need more casseroles, and we didn’t need someone to do my laundry. All of that is so great and appreciated, but that’s not my ultimate need. My ultimate need is a cure for my type of cancer. So since everyone wanted to do something to help, we decided that now seemed like the perfect time to start our nonprofit.
Where does the name come from?
I had been writing a blog since I was in Kona, but a lot of people were reading it after I was diagnosed, because that’s how I kept people updated. It was called Open Hands Overflowing Hearts, because that’s a motto that I try to live by. If we have open hands, we are ready to let go what needs to be let go of and ready to receive what’s given to us. And then that’s when our hearts are overflowing.
What is your dream for OHOH?
My dream for OHOH is for it to be an international organization. Awareness is needed, because if you don’t know that there’s a need then you’re not going to meet a need. Just four percent of funding goes toward research for all pediatric cancers grouped together—not just my type of cancer. So my dream is definitely to see cancer eradicated, but my dream for OHOH is to be an organization that everybody knows. I want awareness of childhood cancers to prompt responses in people and for OHOH to provide tangible ways to respond.
What is the most challenging thing about balancing your time with school and OHOH?
I am always crazy busy, running around at 100 miles a minute and who knows to where. I try to do 100 things at once, all the time. I am constantly sitting in class, trying to write a post for OHOH’s Facebook and coordinate a meeting for OHOH-Auburn, and then I’ll have two documents pulled up on my computer, one is a paper I’m writing and one is a proposal for a grant that we’re going to fund. But it’s really fun. It’s one of those things that will stress me out to the max sometimes, but I get to the end of the day and I know that I’ve done everything I could do. I spent every second of that day.
What is the most rewarding aspect of your work with OHOH?
When we get to donate money to a hospital, researcher or program, I couldn’t be happier. We stressed and we cried and we laughed, but at the end of the day we just wrote a $130,000 check, and it’s so awesome. I get so happy in those moments because that’s why we do it. It might be hard sometimes, but it does produce results.
What are you most proud of?
When it comes to the end of an event, I can step back and look at what we’ve accomplished. Even though I am not the person that’s running the show, because there are so many pieces of the puzzle, it’s still such a great feeling. That’s my most proud moment, when I can step back and say, “I had a part of this. I helped raise $100,000 or $100. I participated and I made a difference.”
What is your favorite thing about Birmingham?
Birmingham is growing a lot, and I love discovering new places and experiencing new things. My favorite thing about Birmingham is probably all of the food. When I have friends come visit me, I always know where we’re going to eat.
What are your must-visit restaurants in Birmingham?
What do you like to do in your spare time?
Sometimes, it’s just nice to not do anything. It’s nice to just sit and relax. Whether it’s with friends, my boyfriend or my family, sometimes just doing nothing is the best.
What are your guilty pleasures?
Chocolate and pasta
What is one piece of advice that you would you give?
As cliché as it sounds, my best advice would be to not wish your life away. You’re always going to find something else that you can be wishing for. And I think it’s great to look forward to things, and it’s important to have goals, hopes, dreams and plans, but if you don’t enjoy where you are, then you’ll always be unhappy because you’re constantly searching for something else.
Aside from faith, family and friends, name three things you can’t live without.
My dog, my planner and, as sad as it is to say, my phone
Please visit OHOH’s website for more information on how to get involved, as well as for more information on the #100Ways100Days campaign and this year’s Answer to Cancer event at Regions Field. Thank you to Tristan Cairns for the stunning photos of Kayla in her “happy place” at Auburn University.