Every Day is a Miracle

It is Spring Break, but Kayla Perry isn’t at the beach.While many of her classmates have made their yearly diaspora to the Florida panhandle, Kayla is in the office, working. It might seem a bit unconventional for a freshman at Auburn to be spending Spring Break this way, but for many reasons, Kayla is no usual freshman.Two years ago, the unthinkable happened: Kayla was diagnosed with high-risk Stage IV neuroblastoma, a form of pediatric cancer that claims the life of a child every 16 hours.But today, there is not a hint of pain on Kayla’s face, and the only physical evidence that she is sick is her closely-sheared head.“Hiye! I’m Kayla,” she says, shooting out an arm.She smiles as she remains seated in a chair, twitching her legs back and forth like a young girl waiting on an ice cream cone, or her first date. Her pretty dress and eyes flash a potent blue, as behind her a large, sprawling window reveals the undulating hills of Birmingham, and Vulcan, the 56-foot-high cast iron statue, which appears no bigger than a thimble. The room is half travel agent office, half nonprofit headquarters (a gallery of beachy destinations drape the walls) and her mother Christen—globe specialist—is pattering away at a desktop.Knowing her situation, it is natural to feel sorry for Kayla. Simply looking at the paucity of hair on her head instigates a sense of woe, and cancer is not supposed to happen to sweet girls.Her chances of survival, doctors say, are not good. Statistics show that only 40 to 50 percent of children in the high-risk category will live past five years. One would think that with such a prognosis Kayla’s demeanor would exude hopelessness, chagrin. Yet Kayla exhibits inexplicable joy in the face of cancer, laughter in the sting of death. She is springy, full and thirsting for life.Kayla is studying to be a nurse, and in many ways she’s going about her life as if there were no diagnosis at all. She’s business-as-usual.“Heavens no!” she says when asked if she always wanted to be a nurse. “I used to be squirmy. I’d cry when I saw a needle.”As a young girl, Kayla was homeschooled by her parents and was encouraged to try a variety of pursuits. For a while, Kayla fell in love with photography. She even interned (at 16) with a professional in Panama and shot a few weddings. “Being put to work, that’s the best way to learn,” she says assuredly.She tried other things. Ballet. Writing. Her life was normal.Kayla grew up in the youth group at Hunter Street Baptist, but since her father Rob was a itinerant music pastor, she was able to experience a cluster of churches in the Birmingham area. When she was only 5, Kayla became a Christian.“I didn’t understand everything,” she admits. “But I knew that I needed Jesus.”From church to church, Kayla listened to testimonies of former drug and alcohol addicts who came to Christ. Because of this, Kayla struggled to embrace her own story. “I thought, ‘I don’t have a good story.’ Nothing was dramatic about my story,” Kayla says.She no longer has to worry about that.When she was 17 years old, Kayla traveled to Hawaii to participate in a Christian organization called Youth with a Mission (YWAM), where she studied journalism, photography, and videography. What should have been a fun learning experience turned frightful for Kayla, as she began to have unexplainable nosebleeds. “I had been healthy my whole life, so any sickness was so foreign to me,” Kayla recalls. “It was hard because I didn’t know what was wrong.”In March of that year (’13), her team left for Kenya with the hopes of sharing the Gospel and “bringing light into dark situations” through their creative gifts.The nosebleeds did not discriminate based on geography, and within only a few weeks of Kayla’s entering the Kenyan slums, they increased. Soon, Kayla and the other missionaries would be leaving for the African bush, an area devoid of medical care. So Kayla decided give in and see a doctor while she was still in the city.After a week of tests and communicating with Kayla’s family, the doctors advised Kayla to return home. She was devastated to have to leave her newfound friends and her mission.Back in the states, Kayla would soon be at the epicenter of shock. Tests were run in Birmingham, and the final diagnosis came down on April 26 like a hammer.“At first, I thought, ‘That’s not right. That’s not me,’” Kayla says.But although it was the toughest moment of her life, there was no time to waste and little time to reflect. After the mighty fall, Kayla and family had to find their footing.“Immediately, we jumped on it,” Kayla says. “We had to take care of it.”The first order of business was chemotherapy. Kayla had always taken pride in her hair (says it was her “security blanket”) and so losing it was of chief concern. “I was plenty girly enough and I didn’t want it to fall out,” she says.To ready herself, she cut it short into a pixie cut, and as the day neared the family held a head-shaving party.“Dad, my brother, my boyfriend, and my boy cousins took turns shaving their heads,” laughs Kayla. “We didn’t want it to be sad or a terrible moment. It took off a lot of unhappy pressure.”For the next few months, the family would get to know Children’s Hospital and its staff intimately, as Kayla became a regular and Christen learned to accept, over time, the new reality. The family drove back and forth, talked to doctors and staff, and prepared for life with cancer. After chemo, Kayla received a bone marrow transplant. The entire treatment process took a year-and-a-half.“All of the nurses on the 8th floor know us,” Christen says. “It’s so odd that our car autopilots to Children’s. It feels so normal to be there. It’s a home away from home. But that’s not normal.”In addition to treatment, the Perrys have taken a somewhat holistic approach to battle. Kayla has to maintain a strict diet regimen, eating a mostly Paleo diet and staying away from sweets, although she admits that her palate longs for a few deviations. “I love wings! The Ultimate Cheat Day is a lot of chocolate and French fries. Oh—and bread. A bunch of bread. And pasta,” she says.Spiritually, the Perrys hold on to their faith in the midst of this horrific verdict. Fifteen years later, Kayla knows she still needs Jesus. “I am constantly learning,” says Kayla. “You have to have trust and faith. What else can you do?”“This life is just a breath,” Christen adds. “But if you believe in life after death, in heaven, you realize that this life is just a small part of it.”Christen says at times she has to take a walk around the block when things get difficult, but has submitted to God’s plan. “Weeks will go by and I’m not affected, but then some random moment I’ll almost fall apart. I pray every day that God would touch the spot where her cancer is. I know that God can heal her if He chooses to.”Instead of focusing solely on their plight, Kayla and Christen have used their situation to help raise awareness and money for pediatric cancer as a whole. They became the paladins of a 501(c)(3) nonprofit called Open Hands Overflowing Hearts, or OHOH. Through the organization, they have raised money through campaigns such as “Give it up” and $20 on the 20th (Kayla’s birthday), and have a 5K scheduled for April 4. They have raised over $400,000.For OHOH, finding a cure for pediatric cancer is paramount. “Cures are one day going to be found,” says Kayla. “But kids are passing away. We don’t have time to wait. We have to find a cure sooner rather than later. “The family already has firsthand experience with death, as they have made friends with patients and parents who have lost their children to cancer. Kayla befriended a girl named Corbyn Wile, a fellow patient at Children’s who eventually became known as her Alabama counterpart in the fight against pediatric cancer.“We met in clinic,” Kayla says. “We kept in touch, texted a lot. I think we became close because we understood the problems we both faced.”Kayla and Corbyn had planned to spend Spring Break with one another this year but those plans were thwarted by Corbyn’s untimely death just a week and a half ago.“R-H-A-B-D-O-M-Y-O-S-A-R-C-O-M-A,” Kayla says, spelling it out, letter-by-letter. “That is what she had.”Christen has made friends, too. She says that in her bathroom, she keeps a list of people to pray for and call, since support tends to dwindle over time once a family has lost a loved one.But for the Perrys, the whirlwind continues. The family tries to find a sense of normalcy, but there is little normal about this situation. The only thing that gives them a sense of consistency, stability, and calm is their faith in Christ. They have given up trying to understand why or for how long Kayla might be with us, or whether or not this storm will pass or will be unrelenting. Instead, they try to focus on getting the most out of life every day and plodding a path when there is none in sight.Kayla’s perspective is the thing that is most admirable. Her attitude. Her joy. She sees wonders in the midst of this. She rejoices in the midst of her suffering.“I think God does allow bad things to happen, but He works it together for good, for a greater purpose,” she says.Kayla believes that God is using her situation to speak to people.Then Christen and Kayla talk about miracles. While both are hoping for a miracle in the form of a cure or physical healing, they recognize that there have been lots of miracles in the process and that miracles often come in different forms.“We have raised $400,000 for cancer, that’s a miracle,” Kayla says. “And we’ve made lots of great relationships, that’s a miracle.”Kayla’s unique tour has included miracles in the form of star-crossed meetings. Kayla’s favorite singer, Ben Rector, gave her a private performance. She also met Auburn head football coach Gus Malzahn, Auburn wide receiver Sammy Coates, Governor Robert Bentley, and members of the band St. Paul and the Broken Bones.As Kayla is talking, Christen has moved from behind her computer to a table, where she sits pensively and listens to her daughter as she answers questions. The light from the window is reflecting off of her chestnut blonde hair.“Every day is a miracle,” Christen adds, as if a light bulb has flickered on.But Christen knows that included in those daily miracles are good moments and bad moments. Such is life. Kayla and Christen’s spiritual cocktail is to return to God when the bad seems to outdo the good.“I don’t always have a great attitude,” Kayla says. “But the bad days will end. There are always worse situations than yours. I am not going to let cancer define me.”By becoming a Christian, Kayla has already beaten death. By taking her grim diagnosis and flipping it on its head, she’s already beaten cancer, no matter the outcome. By going after life, Kayla is winning.It is unclear how much longer Kayla Perry will live. But she doesn’t focus on that. She focuses merely on the fact that she does live while she’s here.How does one find joy in the midst of suffering? Kayla and Christen Perry will tell you by a stalwart faith. By relying on God. By looking at every day as a miracle, a gift. By taking that precious gift and giving it back to the world.If every day is a gift to receive and give back, twenty-year-old Kayla Perry has given us over 7,000 of them. 78 To support Kayla, Rob, and Christen in their mission to eradicate pediatric cancer, please visit www.ohoh.org. To participate in the 5K on Saturday, April 4, please visit https://runsignup.com/Race/AL/Helena/OHOH5KandFunRunFor more inspirational stories of Alabamians, please visit www.facebook.com/78mag.Photos by Al Blanton