Reagan Brown was 7 years old in 2015 when she started dragging her right leg as she walked.
Her parents took her to a chiropractor, then an orthopaedic specialist in her hometown of Mt. Juliet, Tennessee, who recommended physical rehabilitation. But her gait worsened, and she was referred to Steven Lovejoy, MD, a pediatric orthopaedist at Monroe Carell Jr. Children’s Hospital at Vanderbilt.
From there, she saw William Burnette, MD, in Pediatric Neurology, and a five-hour MRI of her back uncovered the problem — a large tumor that spanned five vertebrae in the thoracic region of the spine (which extends from the neck through the torso). The benign nerve tumor, called a schwannoma, was located from T-1 down to T-5. Her spine was “angry” and swollen from her lower back all the way up into her brain.
“It essentially took up the entire spinal cord in that area,” said Christopher Bonfield, MD, associate professor of Neurological Surgery and director of the Pediatric NeuroSpine Program. “It was a massive tumor and in a bad location.”
The surgery to remove the tumor was scheduled for the following week. Reagan’s family was told to be prepared she might come out of the surgery paralyzed and that it could be permanent.
“When you look at the tumor on the MRI scan, it had grown and basically filled up the entire spinal canal to the point that on the scans we couldn’t even see normal spinal cord. We could just see tumor,” Bonfield said.
To remove it, Bonfield had to enter through Reagan’s back, painstakingly dissecting skin and muscles away from the bones of the spine, lifting the bones on the back of the spinal column to reveal the covering that surrounds the spinal cord. He had to open the sac, then cut into the middle of the spinal cord, gently resecting the tumor from the inside of the spinal cord from top to bottom. The team hoped they had taken out all of the tumor, but only time would tell. The surgery took more than seven hours.
“Our plan was to recuperate after surgery, then go home,” said Reagan’s mother, Renee. “But after surgery she was paralyzed from the waist down.” She stayed at Monroe Carell for two weeks, then Reagan and her mom were sent to Children’s Hospital of Atlanta to an intensive five-week pediatric rehabilitation program. While they were there, Reagan’s dad, Heath, and older siblings, Courtney and Garrett, would come and visit on weekends.
“She had to learn to walk again,” Renee said. “When she came back home, she went back to school in a wheelchair. Her school couldn’t accommodate an aide, so I went and sat in the classroom with her for weeks.”
Reagan finally graduated to a walker and continued physical rehabilitation through Monroe Carell’s pediatric rehabilitation services.
“When you resect anything from inside the spinal cord, there are huge risks, let alone trying to remove a tumor that’s basically filled up the entirety of the spine, leaving the spinal cord itself expanded and pushed to the side,” Bonfield said. “You generally think that the patient will be weak for some time, to the extent we aren’t sure, and we can’t be sure what they’ll recover until many months afterward.”
Reagan regained strength, and the pediatric neurosurgery team saw her every six months for scans to determine if there was more tumor left inside the spinal cord. In 2017, two years after the initial surgery, a small area began to grow again. But Reagan needed to get stronger before a second surgery.
Again, the family was told to be prepared she might not walk — one major surgery on the spinal cord is a risk. Two, even riskier. So, prior to the surgery, they scheduled two trips — to New York City and to the beach. “We walked all over New York. We had so much fun at the beach. We did as much as we could possibly do in the process of waiting for that next surgery,” Renee said.
On the day of the surgery, when they arrived at Monroe Carell, they found a pink gift bag in Reagan’s room with a note from her operating room team, many of the same team she had two years prior. “It is such an honor for us to be able to take care of you again. You are a ray of sunshine that left a lasting mark on our hearts. We will take the absolute best care of you,” the card read.
Bonfield and his team were able to remove all the remaining tumor. The night after the surgery, Reagan wiggled her right foot. Four days later, with the help of a walker, she walked out of Monroe Carell.
“We knew she wasn’t going to be 110% again, but she went from being paralyzed to walking again at 7 years old. The girl can … you just never know what to expect from her. We learned to live day by day,” Renee said.
In 2019, Reagan underwent a third spine surgery, this time to correct a hump (post-laminectomy kyphosis) that had formed on her upper back. The spinal deformity occurs in about half of children who are operated on for spinal cord tumors. “The child’s head and neck fall forward resulting in a hump on the upper back,” Bonfield said. “This happens much more often in young children because they’re still growing, and their bones and ligaments aren’t as strong as they would be if they were fully mature.”
During the procedure Bonfield inserted screws from her shoulder blades to her mid lower back to straighten out the curve. Then, because of the way her bones were fused together where the curve occurred, he had to reach around the spinal cord, cut out the bone in the front and reconstruct the spinal column, pulling her head back over her shoulders.
“Reagan has had a lot going on in that one area, and the fact that she’s recovered as well as she has after each one of these operations, any of which could have caused permanent paralysis, is wonderful,” Bonfield said.
Reagan has slight nerve damage in her right leg and still walks with a limp, but she was able to play volleyball in seventh and eighth grades.
Today, she’s a healthy 15-year-old freshman at Green Hill High School in Mt. Juliet who loves hanging out with her friends.
“She has no limitations, no boundaries. When I look back, I think she’s one of God’s miracles. There’s no other way to describe it, really,” Renee said. There have been no signs of tumor on her MRI scans.
An ambassador for Make-a-Wish, Children’s Miracle Network and Monroe Carell, Reagan is “all smiles and positive,” her mom said. “She’s got the best outlook on life. Her whole time in the hospital, every picture that you see, even when she was learning to walk again, she was always smiling.”
Renee credits the pediatric neurosurgery team, including Bonfield, Haley Vance, DNP, CPNP-AC, and Kayla Grace Gross, RN, with helping the family through some dark times.
“They are the only reason we got through this. They were so warm to us and so good to her.”
Bonfield said the family deserves praise for how they have followed through with her care. “Her family is all about physical therapy and rehabilitation and keeping her active, doing everything they can to gain back what she lost and maintain what she has. An amazing family.”