Keeping pace: ‘Superhero’ Zachary hasn’t let a brain tumor break his stride

Zachary Sonnek, 11, loves being active, whether that means running or playing baseball, golf, or hockey. “He’s always been ‘go, go, go,’” says his mother, Nicole. So two years ago, when he told his parents he occasionally had trouble breathing, they initially thought he just needed to pace himself.

Although he had a clean bill of health from his pediatrician, the breathlessness continued and eventually became more frequent. When Nicole and her husband, Joe, witnessed one of Zachary’s episodes themselves, they suspected something else was going on. Cardiac tests revealed a healthy heart — but during neurologic testing, Zachary had a seizure and was later diagnosed with epilepsy. In February 2022, an MRI scan revealed the cause: a slow-growing type of brain tumor called a meningioma.

More than just a patient

As Zachary’s seizures progressed over the next several months, neurologists at his local children’s hospital tried different medications to get them under control. “His doctors in Minnesota are great, but just couldn’t get him under 12 seizures a day,” says Nicole. “They knew he needed surgery and understood he needed more specialized care to focus on this big next step.”

Because of the location and complexity of Zachary’s tumor, it would be impossible to remove completely. After speaking with neurosurgeons at several different hospitals, the Sonneks landed on Dr. Lissa Baird, co-director of the Brain Tumor Center at Boston Children’s Hospital and Dana-Farber Cancer Institute.

“She explained everything to us in such a calm and easy way that we were able to understand the ‘whys’ and ‘hows’ of treatment,” says Nicole. But the Sonneks also liked that Dr. Baird viewed Zachary as more than just a patient. “She wanted to know more about who he is and what he enjoys, so she could help get him back to those things. It made complete sense to trust her with our son.”

Flawless collaboration

A month later, Zachary was on his way to Boston, where he would undergo surgery to remove part of the tumor. While the procedure was a success, further testing revealed that he had a grade 2 meningioma, a faster-growing type than his doctors originally believed. Grade 2 tumors are also more likely to recur after treatment.

For this reason, Zachary would need to also need to have radiation therapy. This past January, he and his family returned to Boston for seven weeks so he could undergo treatment with radiation oncologist Dr. Hesham Elhalawani.

“We could have stayed in Minnesota for radiation,” Nicole admits. “But we just appreciate the collaboration at Boston Children’s so much — it’s been flawless. And Dr. Elhalawani has an amazing bedside manner. They take this stress we are going through and create solutions to better days ahead.”

Zachary’s care team in Boston also works closely with his doctors in Minnesota on follow-up scans. And although treatment for his meningioma has ended, Zachary’s journey at Boston Children’s hasn’t: He’ll be returning soon to visit neurosurgeon Dr. Alfred Pokmeng See in the Cerebrovascular Surgery and Interventions Center for surgery to treat a pre-existing and unrelated brain aneurysm.

Working to get back in the game

Back home in Minnesota, Zachary is looking forward to resuming his active lifestyle. While the aneurysm has delayed his return to team hockey, baseball, and other contact sports, he’s back to riding his bike and running any chance he can. Feeling sidelined hasn’t always been easy. “He’s very competitive and has had part of his childhood ripped away from him. It’s the hardest part of all this, as a parent, to tell your son who has been through so much that he can’t do things he loves,” says Nicole.

Despite his challenges, Zachary has taken things in stride. And his experience with medical care has piqued a new interest in science and taught him how to advocate for himself. “He’s so strong and so proud of how far he’s come,” says his mom. “He’s our superhero.”

Learn more about the Brain Tumor Center.