Empowered by experience: From brain tumor patient to healthcare champion

At 23 years old, Megan Kaleb, now 26 was suffering from migraine headaches and relentless nausea. However, having come down with COVID-19, she chalked the lingering symptoms up to aftereffects of the virus.

The trouble was, even months later, she still felt awful.

"I started to have numbness on the left side, but I learned to live with the symptoms," says Megan, who came to the U.S. from South Africa to work as an au pair in Chesapeake. "But then the headaches started negatively impacting my relationships. I couldn't do a lot because I was in so much pain."

Megan and her husband, Clay, went to an urgent care. Tests showed nothing unusual, so the doctor recommended going to an emergency room for further evaluation.

The next day, after a Father's Day celebration at the beach with Clay's family, Megan checked into the emergency department at Sentara Norfolk General Hospital. After a CT scan, Megan was returned to a room where several doctors were waiting for her.

"I was so naïve about everything, but when Clay saw the doctors, he knew it was something serious," Megan remembers. "They told me they had found a mass on my brain, and I had to be admitted. I still had my swimming suit on from the beach. I was shocked."

Her journey with a brain tumor diagnosis was just beginning.

Beginning of a long road

Megan was diagnosed with a central neurocytoma, a rare benign brain tumor found primarily in young adults. When a central neurocytoma develops, cerebrospinal fluid CSF builds up in the brain, causing a condition known as hydrocephalus. The extra CSF puts pressure on the brain, which can lead to headaches, seizures, fatigue, vision problems and more.

Dr. Dana Adkins, a neurosurgeon with Sentara Neurosurgery Specialists, began developing a plan to remove Megan's tumor.

"Throughout the process, Dr. Adkins made me feel at ease as he guided me through each step of the treatment," Megan shares. "He even called my family in South Africa to explain my condition. I immediately trusted him and was so grateful that he was part of my care team."

An inspirational meeting

The size and location of Megan's tumor meant that not all of the tumor could be safely removed at one time. A second surgery would be needed to remove remainder of the tumor. Dr. Adkins successfully performed the first stage of the removal, and Megan was admitted to the Neuro Critical Care Unit (NCCU) for recovery.

During her time in the NCCU, Megan met Caroline, an ICU nurse known for her kindness and dedication to patient care. Caroline's support played a crucial role in Megan's healing journey. Caroline mentions, "Megan was the nicest patient. Despite her most difficult days, she found a way to be positive. Megan has left a lasting impact on myself and many other nurses."

Megan had a drain placed in her brain during surgery to assist in diverting her CSF. Caroline remembers that Megan was surprised by all the limitations of having a drain inside her brain.

"Sometimes I think for those of us in healthcare, we forget how much the general public doesn't know about hospitals and surgery," Caroline states. "Even with all the education provided to Megan, she still had gaps in her knowledge about the brain tumor process. This helped the staff realize that we can always do better and offer more to our patients."

Caroline took these moments to heart and began reflecting on what changes could be made to prepare brain tumor patients better.

Pushing up the timeline

During this hospital admission, it was determined that Megan needed to have a shunt placed to divert her CSF permanently. She underwent this surgery and was cleared to go home, knowing she would be returning in a few months for another brain surgery.

Initially, the plan was to wait three months for the next surgery so Megan could regain strength. "By this time, I had become so depressed," Megan remembers. "I was in pain all the time. My eyes were sensitive, so the lights had to be off, and I knew I still needed another surgery to remove more of the tumor."

Dr. Adkins recognized how discouraged Megan was becoming and decided to expedite her surgery.

"Dr. Adkins took the time to explain all the possible complications and risks of surgery to me and my family," Megan shares. "There was a risk that I may lose my peripheral vision from this surgery. But thankfully, with Dr. Adkins' expertise, my surgery was a success – the tumor was removed, and my vision was saved!"

"Every patient's problem is unique," Dr. Adkins explains. "Megan had a complicated issue with a tumor that was large and centrally located, and she was young and otherwise a healthy woman. Removing the tumor and preserving her neurological function was of paramount importance. I knew immediately that it would take several surgeries to remove the tumor from different incisions, and this would be a difficult process for her. Every step of the way, she showed faith in me, which made it easier to perform these complex procedures. In each recovery, she showed an indomitable spirit that was inspiring."

From setback to triumph

Megan was readjusting to everyday life. She was back at home, ready to move on from her brain tumor. She celebrated Thanksgiving with her loved ones and was preparing for Christmas. Megan and her mother-in-law were spending the day making cookies when suddenly, Megan could no longer move one of her arms.

"I sat on the couch, but I didn't want to go to the hospital again," Megan says. "Two seconds later, my arm started shaking, and I had a full-blown seizure with my mother-in-law holding me." They called 911, and an ambulance took her to the hospital.

Upon arrival, Dr. Adkins determined that Megan had developed hydrocephalus again, which was not uncommon after her type of surgery. Megan would need another shunt to prevent any future seizures.

After this hospitalization and once Megan was discharged, she began to build back her life and reflect on her journey. Inspired by the exceptional care she received from Dr. Adkins, Caroline, and all the other care team members, Megan discovered a deep-seated passion for healthcare. Determined to give back and make a difference in the lives of others, Megan has decided to pursue a career in the medical field. She aims to become a radiology technician who can provide the same compassionate care she received at SNGH.

"So many amazing people have helped me, and I want to have that kind of impact on other people," Megan comments.

A lasting impact for both patient and provider

Megan's journey has not only impacted her future but has also left a lasting legacy on Sentara. Her story has led to the creation of a comprehensive brain tumor guidebook, providing essential information and support to patients and families facing a brain tumor diagnosis.

 

"The moments spent with Megan directly inspired the Sentara Brain Tumor Guidebook," Caroline comments. "Our team of nurses realized that we could make more of an impact with something tangible for the patients to have and be able to refer to. This is such an overwhelming time for patients, and we provide them with so much information that even the most engaged patient, like Megan, can miss important information."

Megan's story is a powerful reminder of patients' impact on the healthcare system and that Sentara consistently finds new ways to improve patient care.

As Megan looks towards a future dedicated to helping others, she carries the lessons learned from her medical journey – the importance of compassion, understanding, and unwavering support in times of need. Her story is a beacon of hope and inspiration, shining a light on the profound difference that caring healthcare providers can make in the lives of their patients.

 

Learn more about our neurosurgery program at sentaraneurosurgery.com.