Oklahoma teen’s severe headaches lead to rare diagnosis, complications

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OKEENE, Okla. - She rolls up her sleeve and smiles at the nurse drawing blood from the bend in her arm.  13-year-old Kaylee Cagle, from Okeene, is a regular patient at Jimmy Everest Cancer Center, where she is beloved by the staff.

Two years ago, Kaylee's world changed forever when severe headaches led to something unthinkable for a young girl.

"That weekend she had a mild stroke, and she was medi-flighted here to Children's Hospital. She was unresponsive, and couldn't form words," Simona, Kaylee's mother, recalls.

It took days and weeks of emergency care and testing to understand what was happening.

"It's quite rare," says oncologist Dr. Joel Thompson.

Diamond Blackfan anemia is a bone marrow disorder that can have life threatening symptoms.

"Because of a rare DNA problem, the bone marrow doesn't make red blood cells very effectively or efficiently," explains Dr. Thompson.

One of Kaylee's complications is not obvious to anyone who looks at her.

"Her skull is too small for her brain," explains Kaylee's mom.  "As she was growing, the skull was putting pressure on her brain and spinal cord, causing the headaches and strokes."

Treatment included high dose steroids and blood transfusions, which saved her life, but also brought new complications. The steroids had the unintended affect of damaging her hips. Some of the bone has essentially died, forcing her to use a wheelchair while doctors come up with new treatment plans to try and restore her hips.

Dr. Thompson remembers telling Kaylee how sorry he was that the medical treatment had this terrible side effect.

"She looked at me and said, 'I don't want you to feel bad. I feel bad that you feel bad.' That to me captures the heart of Kaylee and who she is inside," he said.

Her mother agrees.

"I've seen her get stronger," says Simona Cagle. "We've gotten closer and she's become more caring and she is always trying harder."

Physical therapy sessions are now a regular part of Kaylee's life as she works to regain movement in her hips, with the hope that blood flow will help restore her damaged joints.  She can no longer participate in cheerleading as she used to do, but she has picked up photography as a hobby.

"I like to be with my siblings, and be around little kids" she adds.

You could say Kaylee has a naturally sunny-side up personality.   Her grace and determination is an inspiration to everyone she meets.

"She's a spitfire," Dr. Thompson says with a laugh. "She is absolutely great."

If you'd like to help teens like Kaylee with their medical battles, consider donating to JECFriends.org

'Kids with Courage' is sponsored by the Jimmy Everest Center. 

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