Kaila Kullgren lives by a theory: everything we do in life costs us a spoon. Taking a shower, hanging out with friends or even walking from the bedroom to the kitchen take energy. But Kaila must pick and choose how she spends her days. As a young 19-year-old woman battling cancer, she only has so many spoonfuls of energy to spare.
Kaila was a first-year equine science preveterinary major when she came to Otterbein in Fall 2016. Originally from Cincinnati, she fell in love with Otterbein and bonded with her roommate, Delaney Lyons, immediately. Lyons was one of the first people that Kaila opened up to about her fight with Ewing sarcoma, a rare bone cancer. Kaila has already beat cancer once before in high school, and Lyons has been by Kaila’s side as she battles the same cancer for a second time after being diagnosed in 2017.
About 200 children and young adults are diagnosed with Ewing sarcoma each year, half of whom are between 10 and 20 years old according to St. Jude’s Children’s Research Hospital.
The relapse forced Kaila to move back home to Cincinnati so that she could be closer to her hospital, Cincinnati Children’s Hospital Medical Center, and to her family’s support. Though it has been difficult, she has always stayed optimistic about her condition and
the odds of beating it.
“If you go in with an attitude, like ‘I’m going to survive, I’m going to make the most of this experience, I’m going to try to make every day worth living’ and you’re super optimistic, I personally feel like that optimism helps your body heal,” Kaila said.
In April 2013, Kaila was diagnosed for the first time with localized Ewing sarcoma. Ewing sarcoma causes tumors to grow in bones or in the soft tissue surrounding bones, and localized means that the cancer can only be seen in one part of the body. The tumor was on her pelvis, and she underwent several rounds of chemotherapy and surgery to have the tumor, and much of her hip, removed. The cancer was officially declared in remission in February 2016. Kaila spent her first year at Otterbein on crutches as she recovered from her hip replacement. She dove into her major, which she said was intense but something she is passionate about, and made some close friends. She loved school so much that she didn’t want to come home for breaks.
But in August 2017, just before she was about to return to Otterbein for her sophomore year, something popped up on one of Kaila’s scans that concerned her doctor.
“I was going every three months to get scans done because if there was going to be a relapse, they would want to catch it without doing too much harm to my body,” Kaila said. “I got scans right before I was supposed to move back up to Columbus, and my oncologist called me and he was like ‘Hey, I’m going to need you to go get an MRI, we saw something on the PET scan, and we’re not sure what it is.’”
That “something” turned out to be another tumor, this time on the L1 vertebrae of Kaila’s spine, located about midway down her back. The tumor is two to three centimeters in diameter, or slightly wider than a penny. The discovery of another tumor means that Kaila must put school on hold and stay home in Cincinnati. Surgery isn’t an option because of the location of her tumor, and this time around she will be undergoing a combination of outpatient chemo and radiation therapy to target the tumor.
The chemo takes it out of her, sapping her energy and causing side effects like nausea and headaches.
“Think about how you feel when you have a stomach bug or the 24-hour flu, and you’re puking and you’re vomiting and you don’t feel good,” Kaila said. “Multiply that feeling of ‘you’re going to puke’ by like 25. And you feel that way constantly.”
The pain in her spine and the side effects of the chemo mean that Kaila has to pick and choose what she wants to make of her days. Sometimes using the energy to eat a meal means skipping hanging out with family or doing laundry. But the love and support of her friends back at Otterbein has helped her.
Lyons, her first-year roommate, Gwen Broderick and Emma Kimberly are Kaila’s best friends, and are a big part of what keeps her optimistic.
“They were like the first people to know when I relapsed,” Kaila said. “They were like ‘You did it once, you can do it again, we’re going to be with you the whole way through’.”
It’s rare that a day goes by without a call, Facetime, text or Snapchat from one of her friends. From goofy videos to simply checking in on how she’s doing, talking with the girls is a high point in Kaila’s day.
“It almost made it 10 times harder because she came up opening weekend, and it literally seemed like everything was back to normal,” Kimberly said. “Even though we went through that week without her, when she was there it felt like she’d been there the whole time.”
That weekend was filled with fun, from spontaneously dyeing Kaila’s hair bright pink to painting canvases that now hang in the girls’ dorm, 25 West Home Street. Before relapsing, Kaila had planned to live right across the hall. For now, daily calls and texts must suffice.
“Her optimism is just unbelievable,” Lyons said. “Even if she’s having the worst day ever she can always bring me up… She can bring anyone up, no matter what.”
Though she misses Otterbein, living at home during her treatment has meant spending more time with her family, whose support has helped carry her through. Her mom, Jamie, is a 911 operator for the city of Cincinnati, and her dad, Jim, works at a pain clinic. She also has two younger siblings, Emma, 15, and Gavin, 11. Having such a great support system is one of the biggest reasons she’s optimistic.
“We were always family-oriented, even before my diagnosis,” Kaila said. “Finding out about a diagnosis and realizing the potential consequences really makes you value family time… Obviously I didn’t have a choice, but if I did I feel like I would be much more miserable being up in Columbus and getting treatments than if I were here.”
Having Kaila home has been nice for her parents, though they wish it were under different circumstances. Her dad studied radiation therapy in college, and when he and the rest of her family found out that Kaila had cancer, he said they lost it.
“I’ve had grandparents with cancer and stuff like that, but it’s not the same,” Jim Kullgren said. “[There’s] a lot of fear, a lot of worry, a lot of ‘what if’ and trying to suppress some of that to be strong for her.”
As of right now, it’s too early for doctors to form a prognosis. The chemo is working, which is good news, but there is still a long road ahead. Kaila said that her oncologist is hoping to start proton therapy soon, which will be followed by at least six weeks in the hospital for high-dose chemo.
“In the oncology world, anything can change at any minute,” Kaila said. “Currently, my prognosis is looking to be optimistic, but the high-dose chemo has some very high-risk, rare side effects that could turn things around really quickly.”
Though it’s difficult to see anything positive about cancer, Kaila’s dad said that one thing he appreciates is how much closer they have grown. They talk about everything, even the tough idea that death is always a possibility.
“I feel that I’m the one person in the world she can sit with and talk to and be real, and she doesn’t have to sugarcoat anything,” Jim Kullgren said. “But having to talk to your child about the possibility of them dying and what they want and what they don’t want, it’s hard on the parent… I don’t like talking about it, but I will because I know she doesn’t have very many people she can talk about that kind of stuff to.”
Aside from the support of her family, there has also been an outpouring of support for Kaila from the Cincinnati community, especially from her mom’s coworkers. They started a Facebook page encouraging people to join the “Knockout Team” helping Kaila fight cancer, as well as the hashtag #fight4kaila. They’ve also designed t-shirts and held bake sales to raise money for the family’s medical expenses.
If all goes well and the treatments work, Kaila wants to return to Otterbein to continue her studies, picking up where she left off as a sophomore. Her dream is to become a veterinarian.
“My entire life I’ve always wanted to be a veterinarian; it’s always been my number one dream, my number one goal,” Kaila said. “By beating cancer and going to live my dream, I feel like that is just truly incredible.”
Kaila’s most important advice for people battling cancer or other illnesses is to keep a positive attitude, even when it’s hard. Her optimism is one of the things that her parents and friends say they admire most about her.
“She’s a ‘light at the end of the tunnel’ kind of person,” Jim Kullgren said. “People are drawn to her, and there’s nothing but happiness surrounding her… I have other people telling me that she’s one in a million, and I already know that, but it’s nice to hear it from other people.”
Currently, Kaila’s days are filled with making sure her blood counts are stable and taking a regimen of anti-nausea and other medications. She may always limp from having a hip replacement before the age of 20, but she is grateful that she can walk. She may not always have the energy to get out of bed, but when she does she does things that make her happy, like getting her nails done and playing with her five dogs. She may be two hours away from Otterbein, but her friends make sure she knows that she’s never far from their minds.
After Kaila came up to spend opening weekend with them, Kimberly started thinking about how they could communicate their support for her through more than just phone calls.
“I asked Kaila ‘What phrase or what words will help you through rough days?’” Kimberly said. “Because I feel like the classic “stay strong” gets old.”
Kaila told her: “Oh my gosh yes, it gets so old… “I love you lots, tater tots.”
“So, the saying is more than just friends saying, ‘I love you,’” Kimberly said. “For us, it’s deeper than that, because it’s also us saying ‘I am with you.’”
When Broderick, Kimberly and Lyons went down to visit Kaila in Cincinnati, they brought a basket of gifts for her relating to memories and things she loves. Inside an envelope was a bracelet with the phrase “Love you lots tater tots” inscribed on it. All four girls have one, a constant reminder that even when they’re apart and struggling, they’re not alone.
For students struggling with illness or other circumstances that may require them to take time off from school, general information about officially withdrawing from Otterbein can be found on the registrar’s webpage under the “Withdrawal Procedure” tab. Associate Dean of Students Julie Saker said that in the case of a medical emergency requiring immediate withdrawal, the Vice President and Dean of Student Affairs may be able to grant a withdrawal. If a student is withdrawn for less than two semesters, they can return and register for classes without reapplying to the university.