For Carter, Cancer Is Part of Life—But It Does Not Define Him

But if you ask his parents Amanda and Andrew who he is, that's not where they start. 

"He's energetic, strong and brave," she said. "He takes treatment as part of life."

It began during the winter of 2022, when what looked like another childhood illness suddenly became something much more serious.

Carter was vomiting, refusing his bottle and becoming increasingly lethargic.

Doctors initially suspected meningitis, but after he was transferred to Connecticut Children's, a CT scan revealed something no one expected—a tumor located in the posterior fossa, the lower, back section of the skull that houses the cerebellum and the brainstem. The mass was blocking the flow of spinal fluid, causing a condition called hydrocephalus.

"I remember hearing the word 'mass,'" Amanda said. "It didn't even register what that meant."

Within days, Carter was in emergency surgery with Connecticut Children's pediatric neurosurgeon Dr. Markus Bookland. He was able to remove nearly all of the tumor. Days later, lab results confirmed the diagnosis: Anaplastic Ependymoma, Grade 3: a rare childhood brain tumor.
 

Dr. Bookland recalled, “Ependymomas are notoriously difficult tumors to treat because they often wrap around critical nerves and blood vessels, and Carter’s tumor was no exception. It took hours to safely clear Carter’s tumor from around his brainstem, but he weathered the procedure like a champ and was home faster than kids much older than he was coming out of the same type of surgery.  

But Carter’s care didn’t end in the operating room. Children like Carter need ongoing monitoring and support from a team of specialists over time. Carter has had to tackle multiple procedures and treatments since he was a baby with incredible strength and joy. He is truly an inspiration.”

As doctors worked to relieve the pressure on his brain, his parents could only wait.
 

The weeks that followed became a blur.

Carter spent more than a month at Connecticut Children's, much of it in the Pediatric Intensive Care Unit. Amanda and Andrew practically lived in the hospital while trying to be present for Carter's older brother, Nathan, who was about to celebrate his third birthday.

"We tried to have lunch with Nathan, go to Build-A-Bear and just be in that moment," she said.

After recovering from surgery, Carter underwent specialized radiation therapy. For a while, life settled into a new normal.

Then the tumor came back. That meant another surgery.

And later, it came back again after a third surgery.

Today, Carter's cancer has recurred multiple times, making his journey anything but predictable.

"We've learned to advocate," his mother said. "The goal is always the best life we can give him while keeping the tumors as stable as possible."
 

While Amanda and Andrew took turns nearly living at Connecticut Children's for weeks, the staff became familiar faces, and over time the hospital transformed from the place where her son's life changed into a place where he simply receives the care he needs.

Today, Carter returns every few weeks for MRI scans, lab work and appointments with Dr. Evan Cantor and the Neuro-Oncology team. 

“Ependymoma is a rare pediatric brain tumor, and for some children like Carter, it can continue to come back despite surgery and treatment,” said Dr. Cantor. “Our goal is to control the disease while limiting the side effects of treatment and protecting his quality of life. Despite everything Carter has been through, we want him to have every opportunity to play, grow and just be a kid.”

Carter also continues to see audiology and ENT specialists at Connecticut Children's, along with other specialists who have helped him recover and thrive.

"When I have to go back, I'm not afraid," Amanda said. "It's his place. He's very comfortable there."

For Carter, hospital visits are simply part of growing up.

The playrooms, games and familiar faces have transformed what was once the scariest place imaginable into somewhere Carter feels comfortable.

His parents have watched that same resilience show up everywhere else, too.

Despite hearing loss, countless appointments and years of physical, occupational and speech therapy, Carter continues to amaze his care team. And go on amazing adventures, like his Wish trip to Disney. 

"He blows the doctors away," Amanda said. "He's just so strong."
 

Now 5, Carter has reached his latest milestone: kindergarten.

He’s arrived as the funny, energetic and determined child his family knows—a boy who loves cars, embraces new experiences and rarely approaches anything cautiously.

Cancer remains part of Carter’s story. Regular MRIs, clinic appointments and ongoing decisions are still part of his family’s life. But they are only one piece of who he is.

As his family continues to focus on stability, thriving and making memories together, Carter keeps moving forward—one scan, one milestone and one monster truck at a time.