Ethan Winchenbach was playing with his dogs when he first noticed that something was off. “My vision changed, but only when I looked down,” he remembers. “It was really disorienting.”
His mother, Becky, who is a nurse, knew immediately that something wasn’t right. When the symptoms didn’t improve, she made him an appointment with his local doctor in Florida. Soon, a CT scan revealed a large tumor in his brain. It was February 22, 2022 — and Ethan, then 16, wouldn’t leave the hospital for nearly a year.
‘The way to go’
Ethan’s doctors in Florida were initially optimistic that treatment — chemotherapy, surgery, and radiation — would be fairly straightforward. But the tumor had other plans: Not only did it not respond to chemotherapy, but it also continued to grow. A month later, it had doubled in size.
While Ethan’s doctors tried different types of chemotherapy drugs to see what might work, his parents began researching his options for surgery to remove part of the tumor. Although they reached out to various top hospitals, the Brain Tumor Center at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center — and its co-director, neurosurgeon Dr. Lissa Baird — stood out.
“As soon as we met with Dr. Baird, we felt confident,” says Becky. “She felt that she could treat the tumor in one procedure, without damaging Ethan’s brain tissue.” They felt equally secure with anesthesiologist Dr. Susan Goobie, who promised she would help care for Ethan like he was her own son. And the family appreciated that Dr. Baird and her team respected their religious beliefs and planned a “bloodless surgery” that would avoid the need for a blood transfusion. “We just knew that Boston Children’s was the way to go.”
A devastating development
The Winchenbachs felt even more secure in their choice when Ethan’s treatment continued to prove more challenging than they expected. When insurance changes delayed surgery, Dr. Baird postponed her own travel plans to ensure the procedure happened. Further testing after surgery showed that Ethan had a mixed germ cell brain tumor, a rare form of tumor that contains several different types of brain cancer and would require more chemotherapy back in Florida. The severity of the situation was “shocking and devastating,” says Becky.
When the remaining tumor continued to grow despite chemotherapy, Dr. Aaron Yeo, Ethan’s neuro-oncologist and an expert in germ cell tumors, suggested that Ethan might benefit from a stem cell transplant. In this procedure, healthy stem cells are infused into a patient’s body to stimulate the growth of bone marrow and treat certain conditions, including cancer. Following a successful transplant last fall with Dr. Christine Duncan in the Stem Cell Transplant Program, Ethan underwent another surgery with Dr. Baird and radiation in Florida. Through it all, says Becky, the family was grateful for the support of Ethan’s care team, particularly as he dealt with an array of treatment side effects and complications.
“We felt safe in Boston because they were prepared for anything,” says Becky. “We really appreciated their collaboration and dedication.”
Focusing on the future
After an intense year full of ups and downs, Ethan, now 17, is finally done with radiation therapy, and a recent MRI scan showed no tumor growth. Now, he’s focused on gaining weight and rebuilding his strength so he can return to the outdoor activities he participated in before his diagnosis, like camping, fishing, and biking.
Last month, he got to enjoy more time in nature when a local nonprofit treated him, his parents, and younger brother to a vacation in Acadia National Park in Maine — a trip he’s now well enough to make. And he’s looking forward to pursuing another goal: riding his bike around Florida’s Lake Okeechobee.
“Life,” says Ethan, “is so much better now.”
Learn more about the Brain Tumor Center or make an appointment.
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