Channeling pain into purpose
From a hospital bed outside Atlanta, several days into a clinical trial, Kayla Perry’s words carry more than a little weight when she matter-of-factly states, “I’ve learned there are few things we cannot do.”
The trial is risky; its effects left her dehydrated and malnourished, sending Kayla into the ER in late October. Still, the 19-year-old, diagnosed in 2013 with stage four high-risk neuroblastoma is powering through the trial, and discussing other options with her doctor, because, as she sees it, “there is really nothing you can do but move forward.”
“No one chooses to have cancer, and it’s not a minor setback,” said Kayla. “And people are always telling me things like ‘I don’t know how you do what you do,’ or ‘You are so inspiring and amazing.’ But honestly, there is really no option other than pushing forward and pushing through.”
Kayla’s candor is refreshing, and demonstrates the kind of bedside manner that will prove beneficial to her future goal of serving as a nurse practitioner in pediatric oncology.
“I think that applies to a lot of things that people don’t realize,” she said. “There’s a tough meeting at work, a test you are not prepared to take, a goal to quit smoking, to start eating healthy, to go on a diet. You don’t have to do it, you don’t want to do it, but you have to do it. Through this I’ve learned there are few things that we truly can’t do.”
For their part, administrators and academic advisors at Auburn University have accommodated Kayla’s care regiment requirements with her desire to keep up with as much schoolwork as possible.
“Though I was diagnosed one month after my 18th birthday, neuroblastoma is still considered a childhood cancer,” she said. “I want to be able to help children with cancer the way that I have been helped.”
For both Kayla and her mother, Christen, that includes raising awareness and increasing research funding.
“Childhood cancer is more prevalent than people realize,” said Christen. “Just in the last year, we learned of four new childhood cancer diagnoses in the Hoover area alone.”
Kayla’s journey has been without the benefit of a wide body of research, largely due to the fact that the specific genetic mutation of her cancer is extremely rare, especially for her age.
“I am the oldest person ever recorded in the international neuroblastoma registry to have this specific genetic mutation in my cancer that they look for when everyone is diagnosed,” she said. “I have a lot of weird markers.”
Christen echoed this message.
“We’ve been told so many times, ‘We don’t know because there is not much data on this particular situation,’” said Christen. “There is so much they don’t know about neuroblastoma because it is so rare. That is one of the reasons we are so passionate about raising awareness and funding for research.”
To that end, Kayla and her family have created the foundation Open Hands Overflowing Hearts. Her personal goal through the foundation is to generate and donate as much funding for pediatric cancer research as she possibly can.
“When you talk about health-related underfunding of research, childhood cancer is one of the most underfunded,” said Christen. “Especially in terms of new drug research, there are very few new drugs being used in childhood cancers than there were even 30 years ago. There have been some advances in that time, and the statistics are better today than they were then, but there is still so far to go.”
Though it’s not a journey the Perry’s would wish on anyone, both mother and daughter said they are humbled by the support lavished on them from friends and family. She said she’s been especially touched by the unexpected kindnesses continually shown to their family.
“We’ve had so many people step forward and be so generous,” said Christen. “What I can say is that the experiences of the past 18 months have made me want to be a better person and to find ways to give back as well, in all the ways that I can.”
To learn more about Kayla’s story, to donate or to find out how you can become involved with Open Hands Overflowing Hearts, visit openhandsoverflowinghearts.org.