15-year-old downhill skier Jacob Smith gets back on slopes after battle with brain tumor, blindness

Skiing is in Jacob Smith’s blood – literally.

The 15-year-old started downhill skiing at a young age, following in the footsteps of his father and older siblings. The family often travelled from their farm and ranch in North Dakota to the peaks of neighboring Montana, where Jacob and his siblings competed in freeriding – a style of skiing done on ungroomed trails.

When Jacob’s eyesight suddenly worsened, his family thought a pair of glasses would get him back on the slopes in no time. An MRI revealed something far rarer and more serious. In 2014, Jacob was diagnosed with an aggressive meningioma – a form of brain tumor. He was 8 years old.

Eight years later, Jacob is once again able to ski despite severe vision loss. Doctors and surgeons at M Health Fairview Masonic Children’s Hospital conducted brain surgery to remove the tumor several times, but it continued to regain a foothold in his brain. It’s now been four years since his last surgery and Jacob is cancer-free, although the illness has left him legally blind.

Jacob returned to the mountains between every surgery and continues to ski to this day with the support of family and friends. In 2019, he became the youngest legally blind skier to ski the Big Couloir in Montana. As one of the longest ski routes in the United States, it’s a representation of the long road Jacob and his family have walked over the past eight years.

Creating a treatment plan that supports development

When Jacob first arrived at M Health Fairview Masonic Children’s Hospital in 2014, he had a softball-sized brain tumor. Our experts performed emergency surgery to relieve the pressure it was putting on Jacob’s optic nerve – which was causing his vision loss. Though doctors were able to remove the pressure, the damage the tumor had caused was permanent and left Jacob legally blind.

M Health Fairview Neurosurgeon Daniel Guillaume, MD, MS, helped perform three additional tumor removal surgeries over the next three years. Although meningioma is the most common form of brain tumor – especially among adults – Jacob’s case was rare. Meningioma is not often found in children and Jacob had grade 2 meningioma, meaning it was even rarer and more aggressive.

“Grade two meningiomas can grow quicker. They can also invade tissue and grow into the bone where they’re harder to find,” said Guillaume. “About half of grade 2 meningiomas come back within five years – even when an MRI after surgery suggests the tumor is gone.”

Guillaume worked with a team of physicians at M Health Fairview to create a personalized treatment plan for Jacob. Because of Jacob’s age, the team wanted to remove the tumor surgically if possible and avoid radiation for as long as they could.

“We try to avoid using radiation as much as possible in children with growing and developing minds,” said M Health Fairview Pediatric Neuro-Oncologist Christopher Moertel, MD, who was part of Jacob’s care team. “Surgery has fewer long-term complications.”

In Jacob’s case, the surgeries weren’t successful at permanently removing the tumor, but they reduced the amount of radiation he ultimately needed. Having worked with pediatric meningioma patients for decades, Moertel is now seeing many people coming back with long-term effects of radiation. Monitoring potential side effects will also be part of Jacob’s long-term care plan.

“We have great coordination with our long-term follow-up team,” said Moertel. “Once patients have gotten to a point where we’re not worried about their primary illness, we start to look at long-term complications of therapy and we have world-class experts in childhood cancer follow-up.”