By Keysha Drexel
Journal editor
Kayla Perry has an outlook on life that belies her young age and her uncertain future.
Although the Hoover native is fighting for her life against an aggressive form of cancer, she said she is determined to live each day just as she did before her diagnosis a year ago at age 18.
“The fact that we are never promised tomorrow is not a new concept for me,” said Perry, who is now in her freshman year at Auburn University. “I believe that there’s no such thing as false hope, because when you are hoping for something, you are showing faith. Hoping and having faith means being able to enjoy your life, no matter what.”
And in the 17 months since she was diagnosed with neuroblastoma, Perry has set out to enjoy her life and make sure others fighting pediatric cancer also have hope.
With the help of family and friends, Perry earlier this month launched a nonprofit organization and website called Open Hands Overflowing Hearts to raise money for pediatric cancer research. She raised $15,000 with her first fundraiser and has a goal to raise $400,000 with an event being planned for December.
Open Hands Overflowing Hearts was the name of a blog Perry started several years ago and is now the name of her nonprofit and website.
“I’ve always felt like if I live my life with open hands–willing to receive things and willing to give up things–that I will give what I need to give and receive what I need to receive, and that’s when your heart is overflowing,” she said. “That’s translated well to my aim to help increase awareness and funding for pediatric cancer. Since September is Childhood Cancer Awareness Month, it made sense to launch everything now.”
Perry said her battle with cancer has opened her eyes to just how much is not known about pediatric cancer.
“Throughout my entire treatment, for 15 months, I heard my doctor say so many times, ‘We just don’t know because the research is not there yet,’ and when I realized how little federal funding goes to pediatric cancer research, I knew I had to do anything I could to help find a cure,” she said.
Perry is working now to organize a fundraiser in December to benefit the Alabama Center for Childhood Cancer and Blood Disorders at Children’s of Alabama.
The Answer to Cancer fundraiser is slated for Dec. 7 at Regions Field. The event will run from 4-8 p.m. and will include live music, a silent auction, food and drinks, and trip giveaways. Details can be found at openhandsoverflowinghearts.org.
Perry grew up in Hoover with her parents, Rob, who works for Northwestern Mutual of Alabama, and Christen, who owns Classic Travel Connection in Hoover, and her younger sister Morgan and brother Andrew, who are both students at Spain Park High School. She was homeschooled through Excelsior School and finished her high school courses a year early, in May 2012.
“I knew that the ‘typical path’ of a recent high school grad was not for me,” Perry said. “I moved to Hawaii the next January to study with a Christian organization called Youth With a Mission. I lived there for three months, studying photography, videography and journalism, preparing to go to Kenya and Uganda with a team of nine other girls.”
While she was in Hawaii, Perry started having nosebleeds and unexplained dizzy spells, but she didn’t let it slow her down or distract her from her mission.
“We (Perry and the other girls on the mission team) had a goal of using our creative gifts to bring light into dark situations and be a voice for the voiceless,” she said. “Not only did we want to show the precious people we were working with that there is hope in Christ, but we also wanted to bring home stories of the evils that go on and compel those who are able to do something about it.”
Perry and her mission team traveled from Hawaii to Kenya for what was supposed to be a three-month stay.
“After about two and half weeks of ministry, my nosebleeds started happening more frequently. We were about to leave the city and be without access to medical care, so I decided to get checked out by a doctor before leaving,” she said. “I was hoping he could provide me with a quick fix so I could go to Uganda as planned, but God had other ideas.”
For the next week, Perry traveled back and forth to the hospital in Kenya while the doctors there communicated with her family back in the U.S.
“Eventually, the doctors told me that they were unable to figure out why I was having these odd symptoms, but whatever the cause, it was bad and I needed to go back home,” Perry said. “I was completely devastated–and even stubborn, at first–but I knew it was absolutely necessary to take care of my health.”
Perry packed her bags and returned home to Hoover, thinking she might get to return later to finish up her mission work with the team in Uganda.
Back home, Perry’s doctors ran a battery of tests and told her they should have news for her by the end of the week.
“The doctor did a biopsy on Thursday and told us that if we didn’t hear back from him by 5 p.m. the next day, Friday, then it was good news and there was nothing to worry about,” Perry said. “So, 5 o’clock on Friday rolls around and we haven’t heard from the doctor, so my family decided to go out to dinner to celebrate.”
The Perry family was enjoying their night on the town and had stopped for ice cream when Christen Perry received a phone call from the doctor.
“It was the absolute worst timing. We were all dressed up, celebrating what we thought was a no-news-is-good-news situation, and then the doctor calls at 7:30 on a Friday night and asks us to come to his office,” Perry said.
Perry and her family got the news that night that she had high-risk stage 4 neuroblastoma, a pediatric cancer that typically strikes very young children and infants.
The rare diagnosis seemed unreal to Perry at first, she said.
“I heard the words coming out of the doctor’s mouth, I heard him say that they had found cancerous cells in my bone marrow, but it seemed like it was all distant and happening far away, like it wasn’t real,” she said. “My second thought was, ‘Well, they can fix it, right?'”
But Perry said the answer to that question made her realize she was in for the fight of her life.
“I was already enrolled at Auburn for the fall semester, but the doctor told me I would have to leave school and start treatment,” she said. “That was the moment when it really hit me. I remember thinking that my world was about to be turned upside down.”
And for the next 15 months, Perry’s world was vastly different than it had been before the diagnosis.
“I received the standard protocol therapy for my disease–weeks of inpatient chemotherapy, radiation, a bone marrow transplant and immunotherapy–along with several other treatments along the way,” she said.
After her last treatment, Perry moved into a dorm at Auburn and got ready to tackle life as a college student.
“But the day after I moved into my dorm room, I had to come back to the hospital to get the results of some scans,” she said. “That’s when the doctor told my parents that the cancer had grown, even though I’d received all the therapy I was supposed to receive.”
The doctor told Perry that his strategy had shifted from trying to cure her cancer to trying to maintain it, she said.
“He explained that the chances of me ever being cured are very low and the goal is to keep the cancer from harming me anymore for as long as possible,” Perry said. “The doctor told me that anything I want to experience or do before I pass away, that I should go ahead and try to do it because they don’t know how long they can maintain the disease.”
But instead of making plans to go skydiving or travel the world in the time she has left, Perry said she went right back to pursuing her dreams of being a nurse practitioner in pediatric oncology.
“I don’t know how much time I have left, and the things I want to do aren’t things like visiting the Eiffel Tower and going on some crazy adventure,” she said. “I just want to continuing living my life and going after the things I want to accomplish.”
After she got the news from her doctor that her cancer is incurable, Perry said, she went shopping for the things she would need for her dorm room at Auburn.
“You just have to keep putting one foot in front of another and deal with life as it happens, and that’s what I did,” she said.
Perry said she’s now taking experimental therapy and travels every third week to Atlanta for five days of treatment. She listens to lectures she misses while she’s in the car and does homework while she’s in the hospital in Atlanta.
In between her treatments and schoolwork, Perry is also working to raise money for cancer research through her nonprofit organization and website.
“It can wear me out, but I know it is all worth it,” she said. “I’m not giving up on my dreams.”
