CeCe, a 6-year-old from an undisclosed location, was on vacation last spring when she complained of neck pain. Upon returning home, the discomfort persisted and was followed by a troubling change in her motor skills. Her parents, Mike and Mary, noticed she had stopped using her right hand to hold utensils while eating.
Diagnosis and Initial Concerns
Visits to urgent care and then the emergency department at a local children’s hospital led to neurological evaluations and an MRI. A neurosurgeon reviewed the images and informed the family that they suggested a high-grade spinal cord tumor known as a glioma.
The diagnosis was sobering. Surgery was necessary both to remove the mass and to biopsy it for confirmation. However, the risks were significant. Mary recalls being told that CeCe might never walk again or regain full use of her hands. Many surgeons avoid such procedures due to the inherent dangers, leaving families with few options.
A Second Opinion Changes Everything
A family friend who works at Boston Children’s Hospital recommended reaching out to Dr. Katie Fehnel, a neurosurgeon and director of the hospital’s Spinal Cord Tumor Program. Mike contacted her on a Friday and received a response the very next day.
Dr. Fehnel reviewed CeCe’s case and discussed a surgical plan with the family. She reassured them that their imaging results did not necessarily indicate the worst-case scenario and that she had extensive experience treating these types of tumors. For the first time since the diagnosis, the family felt hopeful.
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Surgery and Recovery
Despite their satisfaction with their local hospital, Mike and Mary decided to travel to Boston for the surgery. The seven-hour procedure was successful. Dr. Fehnel removed most of the tumor, and CeCe began walking again within days.
Post-surgery analysis revealed the tumor was a low-grade pilocytic astrocytoma, a less aggressive form of glioma. However, genetic testing uncovered a rare FGFR mutation, which increases the likelihood of recurrence. The family chose to undergo a second surgery a few months later to remove the remaining tumor tissue.
Life After Treatment
Now back home, CeCe is thriving. She is undergoing several rounds of chemotherapy to prevent any recurrence and has fully regained the use of her right hand with no neurological impairments. Described as kind and spunky, she enjoys spending time with her younger sister, Maddy.
CeCe has even developed an interest in medicine, often using a play hospital setup to care for her stuffed animals. Mary reflects on their journey, saying, “We’re so grateful that the stars aligned for CeCe.”
