Emily Kneussle, a 20-year-old aspiring professional ballerina, was “born a dancer,” says her mom, Kimberly. She started dance classes when she was 3, was attending six-week summer intensive programs away from home at age 10, then left home at 14 to study ballet in Boston.
“As a child she would dance her way down the hall to brush her teeth,” Kimberly said.
In August 2021 Emily was home in Murfreesboro, Tennessee, on a two-week summer break from a pre-professional ballet program in Boston. To keep in shape during her time off, she took an open class at a dance studio in Nashville.
About halfway through the class, she developed a severe headache. Thinking it was a migraine, she stayed until the class was over because that’s what her training had conditioned her to do.
After her parents drove her home, she vomited, took some Advil, vomited again, then went to sleep with an ice pack on her head.
The next morning, she was sleeping soundly when her parents left for work. When she woke up, she called her mom at work to ask what had happened the night before, then called her 20 minutes later to ask the same question. Kimberly called their family doctor and scheduled an appointment for the following morning.
An astute nurse practitioner sent Emily for a CT scan which showed something suspicious. The same day an MRI identified a brain tumor. They were referred to Monroe Carell Jr. Children’s Hospital at Vanderbilt, where another MRI confirmed the tumor, a typically slow-growing pilocytic astrocytoma, which had hemorrhaged in the very center of her brain.
On Saturday, Aug. 21, 2021, the day after she was admitted to the hospital and taken to the intensive care unit, they met with Emily’s surgeon, Michael Dewan, MD, MSCI, assistant professor of Neurological Surgery and surgical director of the Pediatric Neuro-Oncology Program at Monroe Carell. Surgery was scheduled for the following Monday morning.
“Family members suggested a second opinion,” Kimberly recalls. “First, there wasn’t any time for us to fly elsewhere for a second opinion, and secondly, people come here for a second opinion. We’ve got Vanderbilt in our backyard. Why would we leave here? We had full confidence in Dr. Dewan and what he was going to do,” she said.
“As tumors like this grow, they develop frail vessels to feed itself,” Dewan explained. “Likely one of these weak-walled vessels ruptured, causing a spontaneous bleed within the tumor itself. She could have been doing something while dancing that exerted pressure or coughed or sneezed. It’s pure conjecture how and why it occurred.”
Dewan warned Emily, Kimberly and her husband, Shawn, of the risks prior to surgery.
“It (the tumor) was in a problematic location — a sort of no-man’s land to some extent,” Dewan said. “It was near the thalamus, the Grand Central Station for sensation and sensory modalities. It was adjacent to the fornix, a structure important for developing new memories,” Dewan said.
“In order to get down to the tumor, I would need to mobilize important vessels that if injured would result in a catastrophic stroke. I vividly remember talking to her and her parents before surgery and discussing these risks. But I also reassured them that despite the many hurdles, this surgery could be performed safely. I was confident she would do well. Obviously, we avoided these obstacles, and she did beautifully.”
To remove the tumor, Dewan made an incision at the top of her head, drilled off a window of bone, and gained access to a corridor toward the center of the brain. After removing the blood clot, around and within the tumor, the tumor margins could be identified and delicately removed. A portion of the tumor stuck to the fornix and was not resected, to avoid unacceptable memory deficits postoperatively.
An MRI the next morning showed that the team had removed about 90% of the tumor. The next few days awaiting the pathology report were frightening, Kimberly recalls.
“We didn’t know for sure what type of tumor it was, what her follow-up would look like and what the game plan would be — whether she would need radiation or chemotherapy, or they would continue to monitor with MRIs,” she said.
The pathology report was a relief. The tumor was low grade. No radiation or chemotherapy would be needed.
“We don’t usually refer to brain tumors as benign or cancer,” Dewan explained. “We call them low grade and high grade, and you can equate high grade with malignant. Emily’s tumor was low grade, slower growing, less likely to spread, less likely to be problematic. But it doesn’t mean this wasn’t dangerous. If it had bled more, she could certainly have died from this.”
Emily spent only four days in the hospital following her surgery. She only remembers “bits and pieces” of that time.
She returned to Boston to finish her senior year in the pre-professional ballet program in October 2021. Once she graduated, she attended another pre-professional program in Philadelphia before signing a trainee contract with the Grand Rapids Ballet.
Emily admits there were many challenges along the way.
“I had to completely relearn my coordination and how to stand back up on my two feet that I was balancing on a few days before.” She also suffered from performance anxiety and felt “very vulnerable” when people compared her dancing before and after the surgery.
“As much as my recovery was about relearning my coordination in terms of doing ballet and walking again or relearning where my balance was doing the steps and trying to figure out how it felt before, the hardest part was the mental baggage of being in an atmosphere I was so comfortable in before.”
Emily said although she had healed physically before joining Grand Rapids Ballet, the company has helped her heal emotionally.
“When I came here it took me months to tell anyone that I had anything happen to me. It felt amazing to hear people say, ‘I never would have known,’” she said. “I feel completely and utterly safe and healed again, and it’s such a relief to be able to say that. They (Grand Rapids) deserve all the credit in the world for how they’ve helped me.”
Emily recently performed in the company’s production of “Contemporary Visions” and “The Nutcracker,” and she will dance in “Sleeping Beauty” this month.
Now, with scans every six months at Monroe Carell, the small bit of tumor that remains in Emily’s brain hasn’t grown and will be watched carefully over time.
“The team at Vanderbilt is optimistic about Emily’s chances of living a long and healthy life unburdened again by her tumor,” Dewan said. “I’ve had a front row seat to Emily’s inspiring recovery. She has not simply returned to her preoperative baseline, but she has advanced her skill and trade to now be performing on stage with an elite company. I am so proud of Emily and honored to be a part of her incredible journey.”
One of Emily’s clear memories following her surgery was Dewan sitting beside her patiently explaining about the tumor and its removal.
“I know he had probably explained it to me a million, trillion times before, and I had just forgotten, but I remember him doing it as if it were the first time. From the beginning his bedside manner was wonderful,” she said. “Afterward, in the recovery process, it’s a treat to go and see him and tell him all I’ve done. He’s always so kind and tells me what I’ve done is amazing. He’s helped a lot with my anxiety. When I get anxious or freaked out about things, it’s his voice I remember. He’s a person of comfort and a person I admire in my life. He’s amazing.”
