Clinical trials helping child's fight against brain cancer

Nine-year-old Winston Brooks continues his fight against brain cancer in spinal cord. As part of two clinical trials, Winston takes oral pills in order to slow the progression of the tumor inside his body.

Brooks was diagnosed with cancer in his spinal cord in 2021. His mother, Courtney Brooks, said the then-3-year-old boy came into her room complaining of severe stomach pain. After multiple trips to the emergency room and no answers, Courtney Brooks spent months in and out of specialists' offices.

Finally, her son's primary care provider decided to "start from the beginning" with a physical.

"While she had him bent over, touching his toes, I noticed that his spine looked a little curved and so I pointed it out to her," Courtney Brooks said. "She's like, actually it does look like it's a little curved. Let's send him for an x-ray."

From there, an orthopedic surgeon took a look and referred Winston Brooks to Riley.

"[The doctor] said, 'That's not normal for a three-year-old to have scoliosis like this; we need to look further into this,'" Courtney Brooks recalled. "In July of 2021, we had the MRI on Winston's spine and that day it showed that he had cancer in his spinal cord."

The team at Riley decided to remove some of the tumor on Winston's spine to send off for testing.

"They were able to remove some of it but not a lot of it because it was meshed into his cord," Courtney Brooks explained. "That would have done a lot of damage to mess with the spinal cord too much, so they got what they could, they sent it off and it ended up being a low-grade, grade two, glioma astrocytoma, which is technically a brain cancer but it metastasized in his spinal cord."

The location of the tumor makes it impossible for doctors to completely remove it.

"They cannot remove 100 percent of his tumor because it is on the motor track of his spinal cord," Courtney Brooks, his mother, said. "So, if they did, he would be a quadriplegic."

Not long after surgery, Winston Brooks began IV cancer treatment, but sadly it was not working.

"It was just a hard time and at that time we decided to change things up and they said, 'We have a clinical trial for you if he can swallow a pill,'" Courtney Brooks explained.

Winston Brooks' grandmother actually taught him how to swallow a pill so he would be ready for oral treatment.

"His grandma actually helped a lot, teaching him how to swallow a tictac," Courtney Brooks explained.

That clinical trial involves patients taking the pill, trametinib.

"Thankfully because the science of understanding the majority of low-grade gliomas have a DNA mutation called a BRAF fusion, we were able to get him an oral medicine called trametinib that is taken once a day by mouth," Dr. Alex Lion, pediatric neuro-oncologist, explained.

Thankfully, the pills shrunk the tumor. With his doctors' blessing, Winston Brooks got to take a short break from treatment.

"About six months ago, we came off that break, and he got put on a new chemo," Courtney Brooks explained. "A new clinical trial."

That clinical trial is for the oral treatment, tovorafenib.

"The beautiful thing with these newer medicines, tovorafenib, it's a medicine taken once a week," Dr. Lion explained. "Again, at home; much less side effects than standard IV chemotherapy."

Dr. Lion is encouraged by and excited about the future for pediatric patients battling cancer.

"It's an exciting time to be an advocate, someone that gets to walk alongside these kids to be their neuro-oncologist," Dr. Lion said. "We're getting to witness within our lifetimes a big transition. When he started treatment, over 50% of kids, the majority, 75% of kids were getting IV chemotherapy as their main treatment. Now it's close to 75% are probably getting oral targeted therapy for their treatment."

For Winston Brooks, his mother never stopped seeking answers about the root of her child's stomach pain. She and Dr. Lion encourage parents in similar situations to do the same.

"A mother's intuition can be just as much of a powerful diagnostic tool as an MRI," Dr. Lion said.