Michael Methner: Targeting Childhood Brain Cancer With Precision Medicine

A Message From Mike and Emily Methner, Michael’s Parents

Dealing with intense, emergency situations is nothing new for Mike Methner, a 41-year-old police officer and his wife, Emily, a 39-year-old registered nurse. Yet, nothing could have prepared them for the journey that began one evening when Mike noticed something unusual about their son, Michael, who was just 2½ years old. His eyes were not quite right. There was a subtle but persistent at the time nystagmus, an involuntary eye movement. “I pointed it out to Emily, and she immediately got on the phone with the pediatrician.”

The pediatrician didn’t think it was anything serious, but Mike and Emily noticed his vision issues appeared to be getting worse. Emily found a local eye doctor associated with Wills Eye Hospital in Philadelphia for a second opinion. Halfway through the examination, the doctor stopped and insisted an MRI was needed. “And that is when things started becoming very scary,” Mike said.

The MRI revealed the worst—a brain tumor, known as glioma. The news hit like a freight train. Emily, who had spent her career caring for others, suddenly found herself on the other side, where she could do nothing but wait and hope. As a nurse, she knew all too well what the diagnosis meant. “It was shocking because we were expecting it to be a motor issue in his eyes. When we saw the size and location of the tumor and realized that it might kill him, we were completely devastated. They had to pay for our parking because we were crying hysterically as we were leaving the doctor’s office,” Emily said.

In those early days, the fear and uncertainty were overwhelming. While accustomed to facing emergencies at his job, Mike found himself unable to answer a simple question at FedEx about a document. It was the MRI results he was sending to Children’s Hospital of Philadelphia. “The lady at FedEx says, ‘What is the value of this document?’ And I just started crying because it was priceless. And I didn’t know what to tell her. And I just froze,” Mike said.

Michael started treatment with chemotherapy. The drugs kept his tumor stable but there was no shrinkage. The side effects, however, were harsh, ranging from vomiting and hair loss to severe nerve pain. For 5 years, they endured the weekly infusions, hoping that the tumor would shrink or that a molecularly targeted treatment would become available. Unfortunately, Michael’s tumor started to grow again. So, he was put on bevacizumab (Avastin), an antiangiogenic treatment. The tumor responded. However, the treatment severely impaired Michael’s kidney function. “We had to go into the hospital because he was very close to having a stroke from his high blood pressure. And the moment you stop Avastin, the tumor just grows right back,” Emily said.

Michael was next treated with a molecularly targeted therapeutic, trametinib, for about 2 years as part of a clinical trial. “That had a couple side effects that were rough. A lot of rashes, ingrown toenails, which had to be surgically taken care of. And unfortunately, the treatment wasn’t working. It kept the tumor stable, but never shrank the tumor.”

The strain on their family was immense. Lillian, Michael’s sister, was too young to fully understand, but sensed the anxiety and the fear in her parents. She saw her brother getting sick, noticed the long trips to the hospital.

Finally, after years of struggle, a new molecularly targeted treatment, tovorafenib (Ojemda), became available. For the first time, they saw real progress. The tumor began to shrink, and while they knew the battle was far from over, it felt like they could finally breathe. “When we first started out his tumor was 51 millimeters by 45 millimeters and now it’s cut in half, and we are beyond thankful,” said Emily.

Today, Michael is a vibrant 10-year-old, full of life and energy. He loves playing video games, fencing, and reading, just like any other kid his age. His vision, while not perfect, has improved, and his parents are hopeful that he will lead a normal life. “Right now, Michael is doing wonderfully. He is just a regular kid. You wouldn’t be able to pick him out from a group of kids on the sidewalk,” Emily said.

Michael’s experience with cancer has made his parents passionate advocates for medical research. “Cancer doesn’t have boundaries. It affects everyone irrespective of religion, political views, or orientation,” Mike said. “We must have better treatments to help everybody, and that requires funding.” Their hope is that increased funding for cancer research will lead to new clinical breakthroughs, improve outcomes, and eliminate toxicities. “If we can find better medications that aren’t as toxic to the kids and have benefits, you can’t put a price tag on that.”