Makayla Squires is a butterfly-chasing, house-playing redhead, age six. Spend a few minutes with her and you would have no clue that a war raged inside her body just a year ago.
"She had been playing with her brothers and complained that her neck was hurting," explained Claudia Squires, Makayla's mother. "At first we thought maybe she just slept wrong and had a crick in her neck."
After ordering a CT scan of her neck, a radiologist noticed that the third vertebra on her left side was missing.
"The radiologist said in all his years they had never seen anything like it," said Claudia. "So they immediately referred us to pediatric neurosurgery at Levine Children's Hospital.
A series of tests revealed that Makayla had benign Langerhans cell histiocytosis in her neck. With this disease, white blood cells that normally help the body fight infection change. They see parts of the body as foreign objects and attack them. She developed a tumor that had consumed her vertebra and wrapped itself around blood vessels leading to her brain, removing surgery as an option.
Developing a plan of attack called for fresh thinking among the pediatric oncologists, neurologists, neurosurgeons and radiologists at Levine Children's Hospital, handpicked to address Makayla's condition. Though the tumor was benign, they chose a regimen of 52 weeks of mild chemotherapy and the steroid prednisone to shrink the tumor. She also wore a neck brace for 18 months.
It was a lot to ask a child of five to endure, but her care team had a secret weapon to help her through it — a bit of playfulness.
"Makayla fell in love with Amy Kelly, the nurse practitioner working with Dr. Chad Jacobson, her pediatric hematology-oncology specialist," said Claudia. "Makayla would take in bears, puppies and cartoon characters and ask the staff to examine them. And they have graciously done it. They also let her hold on to stuffed animals during MRIs and other tests."
Makayla's mother describes her daughter as incredibly brave and "a super trooper" throughout her medical journey. Claudia says, "She's beginning to be the little fiery redheaded girl she was before all this took place." And with a wry smile, she added. "I’m not sure if that's a good thing or a bad thing."
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