Kid Captain diagnosed with Hodgkin lymphoma at Stead Family Children’s Hospital
Kaelyn O’Brien’s symptoms part of rare syndrome
When Kaelyn O’Brien couldn’t walk down the hallway and her speech became slurred one morning, her parents thought their 11-year-old daughter was having a stroke.
“She was a very healthy kid, no issues,” says Kaelyn’s mom, Tammy. “Everything was perfectly fine up until that point. She mentioned having a headache earlier in the week and we assumed it was a migraine, but that Saturday morning, everything felt different.”
Tammy and her husband, Mike, rushed Kaelyn to their local emergency room, where tests seemed to show nothing out of the ordinary.
“Their first thought was that she was having a stroke,” Tammy says. “But nothing was coming back to indicate that.”
Kaelyn was transferred by ambulance for further evaluation to University of Iowa Health Care Stead Family Children’s Hospital, where the imaging tests were repeated.
“The neurologic symptoms were so strange that it was baffling everyone,” Tammy says, but during an exam, a resident physician noticed something unusual on her neck, which led to a chest scan.
Diagnosis at Stead Family Children’s Hospital
“That decision changed everything,” she says. The scan revealed a mass on Kaelyn’s right lung, and more tests quickly followed. “That afternoon, we heard the words no parent is ever prepared for. They believed Kaelyn had cancer.”
Further tests confirmed that Kaelyn had Hodgkin lymphoma, a cancer that develops in the immune system. In addition to the mass on her lung, an abnormality was detected in a lymph node, which is what the resident had noticed in the earlier exam.
Her parents later learned the neurological symptoms Kaelyn exhibited — the difficulty walking and the slurred speech — were caused by a rare condition called paraneoplastic syndrome. As her immune system began fighting the cancer it mistakenly attacked her cerebellum, the part of the brain responsible for balance, speech, and fine motor skills. The complication is extremely rare in children.
Kaelyn was moved to the oncology floor of the children’s hospital and began an intensive treatment plan involving 21-day chemotherapy cycles. The first three days of each cycle required inpatient stays, followed by immunotherapy shots and additional chemotherapy days later.
“But cancer was only part of her battle,” Tammy says.
Starting over
Because of the damage to her cerebellum, Kaelyn had to relearn skills that once came naturally. During treatment, she spent countless hours in physical therapy and occupational therapy, working tirelessly to regain her balance, walk independently, and rebuild the fine motor skills that had been affected.
Tasks like writing, buttoning clothes, and even walking required determination and patience.
“Day after day, even while enduring chemotherapy, she showed up, worked hard, and refused to give up,” Tammy says.
Her long hair, which reached past the middle of her back, was donated when it began falling out due to the chemotherapy. Kaelyn’s older brother and her dad, uncles, and others shaved their heads, too, to show their support.
Family, friends, and Squishmallows also helped her get through this period, Kaelyn says, with the toys almost needing a full bed of their own.
Making a comeback
Kaelyn graduated from a wheelchair to a walker as she regained her skills and eventually was able to walk on her own. Swimming also helped her regain leg strength, Mike says.
After two chemotherapy cycles, a PET scan showed no evidence of disease, but Kaelyn completed the final two cycles to ensure no cancer cells remained. On Aug. 30, 2024, just two weeks after starting sixth grade, Kaelyn rang the bell marking the end of treatment.
Kaelyn’s cancer is now in remission, and she is returning to the activities she loves, including volleyball, basketball, and softball. She had planned to pitch for her softball team when she first became ill, and the team also has been supportive during her treatments.
Kaelyn also enrolled in a research study about paraneoplastic syndrome to help other people, she says.
Turning 14 on game day, the Jesup, Iowa, girl is in eighth grade, enjoys writing her own stories in language arts class, and hopes to someday be a pediatric oncology nurse.
Kaelyn’s care team didn’t just treat her cancer, Tammy adds. “They helped her reclaim her strength, her independence, and her childhood.”
“From the very beginning, the team was thorough, attentive, and committed to finding answers, even when the situation was complex and uncertain,” she says, citing communication and collaboration between the doctors, nurses, and therapists that helped ensure her family stayed informed and supported. “Beyond treating the medical condition, they care for the whole child physically, emotionally, and developmentally, and they support parents just as thoughtfully, making them feel safe, heard, and truly cared for during the most difficult moments of their lives.”
Kid Captain Hall of Fame
Each football season, we welcome 12 unforgettable patients into our Kid Captain Hall of Fame. Explore our four most recent stories.
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Roger and Ashley Gaul were planning an afternoon of fun following a doctor’s appointment and ultrasound. But their joy quickly turned to heartache: Prenatal tests indicated their baby, Eliana, would be born with spina bifida, a condition in which the spinal column and membranes around the spinal cord don’t close completely during the first month of pregnancy.
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Born in Michigan with a rare heart defect, Beau Harvey underwent three open-heart surgeries before his health journey led to a heart transplant at University of Iowa Health Care Stead Family Children’s Hospital, the only hospital in Iowa that performs pediatric heart transplants.
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