Shaun’s Quest to Send His Brain Tumor to a Black Hole

Shaun cannot remember his life before cancer. He also cannot remember a time when he wasn’t infatuated with space exploration. In many ways, these two things are inextricably intertwined for him.

Now 13 years old, Shaun was just 2 when doctors at the Children’s Hospital Colorado Center for Cancer and Blood Disorders (CCBD) told his parents, Sonya and John, that he had a cancerous brain tumor the size of a pool ball in the left side of his brain.

The diagnosis of pediatric low-grade glioma (pLGG) explained the symptoms he had been exhibiting for months: drooling, loss of speech, and difficulty balancing and moving.

Just as Shaun’s family received this terrible news and he began treatment, their son watched “Mickey Mouse Goes to Space” for the first time.

And that was it. Shaun’s curiosity was sparked, and his passion for space exploration began. Determined to become an astronaut one day, Shaun wore a spacesuit to each doctor’s appointment in the years that followed. Shaun’s tumor type — an astrocytoma — takes its name from the stars, referencing the shape of the cells from which this type of cancer grows.

Today, Shaun learns everything he can about space as a final frontier — much like our dedicated Children’s Colorado oncology researchers are committed to conducting clinical trials and exploring every aspect of the body in their quest for answers, treatments and cures for pediatric cancer.

A Diagnosis with Few Treatment Options

Every child’s journey with pLGG is different, based on the location of the tumor in their brain.

For some, delicate brain surgery can remove all or most of the cancer. But for many others — like Shaun — the tumor’s location makes it nearly impossible to remove fully through an operation.

For these kids, chemotherapy is the only option.

Shaun was first treated with chemotherapy for 12 months, which initially shrank his tumor. After several months, though, as is often the case with pLGG, the cancer started to grow again.

For recurring gliomas, there are few good treatment options. And potent chemotherapies frequently wreak havoc on kids’ growing bodies. At 4 years old, Shaun developed terrible mouth sores with one therapy and needed to take medications with significant side effects to help manage his excruciating pain.

As Shaun’s family waited for a new therapy with fewer side effects, doctors discovered through genomic testing that Shaun’s tumor had a genetic change that made him a candidate for a new chemotherapy clinical trial at Children’s Colorado.

A drug called binimetinib (MEK 162) was FDA-approved to stop the growth of certain kinds of adult cancer and showed promise for shrinking some pediatric tumors. The clinical trial was designed to determine the right dose and side effects of MEK 162 for kids, along with its effectiveness in treating pLGG.

Like black holes — Shaun’s favorite objects in space, which he said he loves because they are the most confusing phenomena — cancer is also terribly perplexing.

“Low grade gliomas are the most common brain tumor that we see in pediatrics,” said Kathleen Dorris, MD, an oncologist in the CCBD’s Neuro-Oncology Program and Experimental Therapeutics Program, who has been Shaun’s doctor from the beginning.

“These gliomas often go dormant after treatment and then ‘wake up’ again. Shaun’s tumor had a genetic change that made us think it would be potentially sensitive to this new orally targeted chemotherapy medicine.”

By participating in this clinical trial, Shaun helped doctors determine the correct dose of MEK 162 for children, better understand its side effects and discover that it can be effective against pLGG.

Shaun was also enrolled in another research study with a different form of experimental chemotherapy, which also recently received FDA approval — the second drug that Shaun has helped move from trials to treatment. Since being on this chemotherapy, his tumor has shrunk 30%.

“Our goal is that these patients live long and happy lives,” said Dr. Dorris. “For Shaun, if we didn’t have clinical research and these new therapies, he very likely could have lost the mobility of his right side altogether and been unable to run and play sports, which give him so much joy. But it is imperative that we find better therapies that don’t have long-term toxicities; patients often undergo years of treatment currently, and we do not want them to develop new problems down the road.”

Funding Clinical Trials through Philanthropic Support

Children’s Colorado can conduct life-changing and lifesaving research because of the financial support of generous donors.

For Shaun and the thousands of other kids diagnosed with cancer each year, these innovations cannot wait.

Shaun’s tumor is constantly evolving and outsmarting the therapies that doctors administer. But thanks to the clinical trials taking place at Children’s Colorado and across the country, progress is being made to find new treatment options and perhaps eventually a cure for gliomas and other brain tumors.