How the stars aligned for CeCe’s spinal cord tumor care

Final spring, 6-year-old CeCe was on trip in Florida when she advised her mother and father, Mike and Mary, that her neck damage. After the household returned dwelling to the Chicago space, her neck ache persevered regardless of Tylenol and relaxation — and he or she developed one other regarding symptom.

“We observed that she wasn’t utilizing her proper hand to carry utensils when she ate,” remembers Mike.

A visit to pressing care quickly led to the emergency division at their native youngsters’s hospital. There, neurological and MRI testing urged that one thing severe may be accountable.

“The neurosurgeon took us into one other room with out CeCe,” says Mary. “He shared the pictures with us and mentioned they confirmed what he thought was a high-grade sort of spinal cord tumor referred to as a glioma.”

A daunting prognosis

If that information threw the household for a loop, so did the advisable remedy. Mike and Mary knew that their daughter would want to bear surgical procedure, each to take away the tumor and to biopsy it, which might affirm the prognosis. The potential dangers of surgical procedure made them nervous — however so did leaving the tumor there, which may in the end trigger her signs to worsen. Mike and Mary knew they wanted to be taught extra about their choices.

“We have been warned that CeCe would probably by no means stroll once more and may not be capable to use her palms. As a result of she would want a tracheostomy following surgical procedure, even her giggle may not sound the identical,” says Mary. “We have been scared and knew we must make a whole lot of changes, however so long as she may nonetheless be herself, we’d give her an amazing life.”

By means of their analysis, they discovered that many surgeons wouldn’t even try the sort of surgical procedure due to the dangers, main households to consider these spinal twine tumors are inoperable.

Thankfully, a household buddy who’s a doctor at Boston Youngsters’s Hospital advisable the household attain out to Dr. Katie Fehnel, a neurosurgeon and director of the hospital’s Spinal Cord Tumor Program.

“We contacted her late on a Friday and by the following day she had reviewed CeCe’s case and spoke with us a couple of plan,” says Mike. “She advised us that she’d handled a whole lot of these tumors and that we shouldn’t leap to conclusions primarily based on the imaging. That was the primary time we had hope.”

Profitable spinal twine tumor surgical procedure

Though Mike and Mary have been pleased with their native hospital, they knew that Dr. Fehnel’s expertise made touring for CeCe’s surgical procedure the fitting choice. Inside every week, they have been in Boston for the seven-hour operation. The process was successful: Dr. Fehnel was capable of take away many of the tumor, and CeCe was strolling once more — which they as soon as thought was inconceivable — and demanding chocolate ice cream days later. What’s extra, it was a low-grade pilocytic astrocytoma, a less-aggressive sort of glioma.

Nonetheless, genetic testing on the tumor revealed a uncommon FGFR mutation. As a result of tumors with this mutation usually tend to develop again, the household opted for a second surgical procedure to take away the remainder of the astrocytoma a couple of months later. As soon as once more, the process was profitable and CeCe recovered shortly — possibly even a bit of too shortly for her liking.

“She was a bit of upset about leaving Boston Youngsters’s so quickly,” laughs Mary. “She didn’t need to miss the remedy canines and exhibits at Seacrest Studios.”

Assist helps CeCe thrive

Again at dwelling, this “sort and spunky” first grader is flourishing as she makes her manner via a number of rounds of chemotherapy to assist stop a recurrence. She’s additionally regained using her proper hand and has no neurologic impairments. CeCe loves hanging out along with her youthful sister, Maddy, and might need a future in medication: She makes use of a play hospital setup to look after her stuffed animals and even carried out “surgical procedure” on Mike’s legs after he lately ran the Boston Marathon.

Cheering him on at Heartbreak Hill? Dr. Fehnel, who ran the identical course the yr earlier than. It’s that type of assist for CeCe and her household that has made the expertise simpler, says Mary. “We have been simply mother and father trying to find a solution, and we’re so grateful that the celebs aligned for CeCe.”

Study extra concerning the Spinal Cord Tumor Program, a part of our Mind Tumor Middle.