Last spring, 6-year-old CeCe was on vacation when she complained of neck pain to her parents, Mike and Mary. After returning home, her neck pain persisted, and she developed another concerning symptom: she stopped using her right hand to hold utensils while eating.
Mike remembers saying, “We noticed that she wasn’t using her right hand to hold utensils when she ate.” After a visit to urgent care, they were transferred to the emergency ward of their nearby children’s hospital, where neurological exams and an MRI hinted at a potentially serious condition.
The neurosurgeon shared the images with them and said they showed what he thought was a high-grade type of spinal cord tumor called a glioma, according to Mary. This diagnosis was frightening, and Mike and Mary knew their daughter would need surgery to remove the tumor and biopsy it.
Mary says doctors cautioned them that CeCe might never regain the ability to walk and could lose hand function. Because the operation carries high danger, numerous surgeons decline to perform it, causing families to think spinal-cord tumors cannot be operated on.
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Seeking Expert Care
A doctor who is a family acquaintance at Boston Children’s Hospital suggested they get in touch with Dr. Katie Fehnel, a neurosurgeon who leads the institution’s Spinal Cord Tumor Program. Mike notes, “We contacted her on a Friday, and by the next day, she had reviewed CeCe’s case and spoke with us about a plan.”
Dr. Fehnel told them she’d treated many of these tumors and that they shouldn’t jump to conclusions based on the imaging. This was the first time they had hope, according to Mike.
A Successful Surgery
Even though they felt comfortable with their nearby medical center, Mike and Mary recognized that Dr. Fehnel’s expertise justified the trip for CeCe’s operation. About a week later they arrived in Boston for a seven-hour surgery that proved successful: most of the growth was excised, and CeCe was able to walk again within a few days.
Pathology identified the growth as a low-grade pilocytic astrocytoma, a relatively non-aggressive glioma. Yet genetic analysis uncovered a rare FGFR mutation, which raises the chance of recurrence. Consequently, the parents chose to undergo a follow-up operation a few months afterward to excise the remaining tumor, and that procedure also succeeded.
