Meet Gavin: A Brain Tumor Survivor Raising Hope for Brain Tumor Research and Education
12.13.2023
Discovering the Cause of Years of Severe Headaches
When now 12-year-old pediatric patient Gavin was around seven years old, he began to get terrible headaches. His parents thought they were just regular migraines, nothing too serious. It wasn’t for another three years, and after some persistent efforts, Gavin’s parents secured an appointment with a neurologist in Hendersonville.
The neurologist quickly set up an eye doctor appointment and an MRI for Gavin. During that eye check, the optometrist noticed that Gavin’s optic nerve was bent, which raised some red flags. On March 17, 2021, Gavin and his parents received devastating news.
“We were hit with those words no parent ever wants to hear: 'Your child has a brain tumor,’” Gavin’s mom, Jennifer, said.
The MRI showed a brain tumor on Gavin’s pituitary gland, attached to a cyst. Gavin was quickly transferred to Charlotte and the care of Carolina NeuroSurgery & Spine Associates neurosurgeon Mark Van Poppel, MD. The immediate concern was the cyst, which was blocking a ventricle and hindering the flow of spinal fluid, causing Gavin’s brain to swell.
Gavin’s condition: Pediatric Pituitary Brain Tumor Explained
The brain is the control center for the body, and inside this control center, there's a small, important area called the pituitary gland. In this case, there's a growth in the pituitary gland that's attached to a fluid-filled sac called a cyst.
The immediate problem is that this cyst blocked a passage for the fluid around the brain and spinal cord. Think of it like a traffic jam stopping the water flow in a pipe. This blockage led to fluid buildup in the brain, causing it to swell, which can be very dangerous.
As a result, this swelling could create pressure inside the head, potentially causing headaches, vision problems, or even changes in behavior. It's important to address this quickly to relieve the pressure and prevent further complications.
Doctors would likely need to manage this by draining the fluid and treating the cyst to restore normal flow and reduce the pressure inside the brain. Additionally, they would need to address the growth in the pituitary gland, as it might be affecting the body's hormone balance, which could also cause various health issues in a child.
Gavin Finds Pediatric Neurosurgical Care at CNSA
The first successful surgery that neurosurgeon Mark D. Van Poppel, MD, performed was to remove the cyst and relieve the brain swelling. On April 12, Dr. Van Poppel performed another successful surgery, removing the entire brain tumor.
Because of the tumor’s location, it was possible that Gavin would face challenges in his recovery, particularly with his memory. In the days immediately after the surgery, it became clear that Gavin’s pituitary gland wasn’t functioning correctly. Dr. Van Poppel and the endocrinologists worked together to find the proper form of hormone therapy for Gavin, and as things began to look up, Gavin was discharged and able to go home.
A Quick Return to the Hospital
Just two days later, on April 22, Gavin’s parents found him in his bed in a coma. His eyes were open, but he couldn’t move or speak, and his parents rushed him to their regional hospital. The emergency room doctor called Dr. Van Poppel to seek counsel on how to treat Gavin best, and Dr. Van Poppel was on the phone while Gavin was treated at the regional hospital. Gavin was intubated to ease the strain on his body and then airlifted back to Levine Children’s Hospital in Charlotte.
Back at the hospital, one of the first faces that Gavin’s parents saw was Tyler Atkins, MD, Dr. Van Poppel’s resident and a member of Gavin’s surgical team. Gavin’s parents noticed Dr. Atkins was worried about Gavin’s condition, but Dr. Van Poppel was even more concerned.
“It was obvious that he took Gavin's situation to heart and formed a unique connection with him beyond a typical doctor-patient relationship,” Jennifer said.
While Gavin was in the hospital on life support, Dr. Van Poppel continued to monitor him and advocate for his care. Gavin’s situation was unique, his mom said, as there was limited literature to guide his medical team. A few days after arriving at the hospital, Gavin was extubated, but his parents could see significant deficits in his abilities — Gavin couldn’t talk, eat, use the bathroom, or walk. He was diagnosed with diabetes insipidus, a rare disorder in which the body isn’t able to regulate its balance of fluids properly.
Holistic Support Throughout a Difficult Time
“Throughout this challenging journey, Dr. Van Poppel and the entire CNSA team stood by our side every step of the way,” Jennifer said. “Dr. Van Poppel made time to visit Gavin at the hospital almost every single day, even on some of his days off.”
Over the next few months, including 55 days at the hospital, Gavin had to learn how to stand, walk, eat, and talk. He went through rehabilitation and started regaining his strength.
“Gavin is still on a daily journey with its own set of challenges, but Dr. Van Poppel continues to be a part of our lives, checking in on Gavin and even gifting him Legos when we visit the office,” Jennifer said. “The exceptional medical care provided by Dr. Mark van Poppel was nothing short of life-saving, instilling a deep sense of confidence and hope in us during a difficult time.”
Jennifer said Dr. Van Poppel’s entire team helped support the family during Gavin’s recovery.
“The unwavering support and communication from Dr. Van Poppel's administrative assistant, Anna, not only during Gavin's treatment but also in the post-treatment phase, has been invaluable,” Jennifer said. “She is always returning our phone calls, answering our questions, or just checking in on Gavin to make sure he’s still doing great.”
Gavin and his family became a part of what they called a “caring, compassionate community.”
“The dedication and empathy demonstrated by the entire team, from the front office staff to the nurses and therapists, made us feel like more than just patients — we felt like a part of a caring and compassionate community,” Jennifer said. “Dr. Van Poppel and his team never let us lose hope or make us feel like Gavin didn't have a future. This sense of belonging, compassion, and the high level of medical expertise combined to make a significant positive impact on our family.”
The family’s journey at CNSA didn’t end with Gavin’s treatment. When Gavin’s younger sister, Ellie, began to experience frequent headaches, the family was extremely concerned, given Gavin’s medical history. Dr. Van Poppel also provided excellent care for Ellie, helping identify the cause of her headaches and determine the appropriate course of treatment.
Learning to Live Every Day to the Fullest
In September 2023, Gavin was a patient champion at CNSA’s 2023 Headed For Hope 5K Run/Walk, which raised over $35,000 for brain tumor research. Gavin completed the 5K and spoke to the other participants to share his story and thank the team who cared for him.
“There were plenty of days when I felt discouraged because of the challenges I faced, but when I needed them the most, I leaned on my support system, including my parents, my siblings, my teachers, my family, my golf coach, and my personal trainer,” Gavin said in his speech. “These people encouraged me and helped me push through all these challenges in my life.”
Gavin’s dad, Michael, also spoke at the event, saying that through Gavin’s brain tumor, their family has learned to live every day to the fullest.
“Live your life, get out there and make those memories,” Henderson said. “Make those experiences because those are the things that are important.”
Help more patients with brain tumors make the most of every day.
The Carolina Neurosurgery & Spine Education & Research Foundation aims to improve the quality and safety of care for patients with brain, spine, and cerebrovascular disorders and injuries. Donate today to support further research and education.
About our Comprehensive Services
Carolina NeuroSurgery & Spine Associates, established in 1940, is one of the nation's largest and most highly respected neurosurgical private practices. Our group provides brain and spine care services, including adult and pediatric neurosurgery, spine surgery, physiatry, neurology, pain management, and physical therapy.
We offer advanced surgical and non-surgical treatment for the entire spectrum of brain, spine, and peripheral nerve disorders, including brain tumors, spine deformities and injuries, stroke, epilepsy, congenital anomalies, concussions, neck and lower back pain, and pituitary tumors.
Carolina NeuroSurgery & Spine Associates’ commitment to advancing the science and delivery of brain and spine care has remained the driving force for its success.
The group comprises 49 physicians, 44 advanced practice providers, and over 550 employees. With nine office locations, the group primarily brings the latest, technologically advanced neurosurgical therapies to adults and children across the Carolinas.
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