12-year-old with extremely rare brain cancer to undergo clinical trial at CHLA in hopes of recovery

Denise Dador Image
Thursday, April 13, 2023
12-year-old with rare brain cancer to undergo clinical trial at CHLA
EMBED <>More Videos

Twelve-year-old Jaxon Toner was diagnosed with an extremely rare form brain cancer that only 7,000 kids in the world have. A charity walk in Griffith Park this Saturday will help to raise money for people impacted by the disease.

LOS ANGELES (KABC) -- Brain cancer is complicated and tricky. Despite years of research, survival rates have remained bleak while those of other cancers have significantly improved. The situation is even harsher for young patients.

Twelve-year-old Jaxon Toner is a straight-A student with a black belt in Taekwondo. But in December, he started to struggle with the left side of his body.

"I couldn't clench my toes. My left arm was weak," Toner said.

"We went straight to the ER because I thought he was having a stroke," said his mother Jennifer Toner.

A brain scan revealed a parent's worst nightmare: a rare pediatric brain cancer called diffuse hemispheric glioma. It was in Grade 4.

"It's listed as an H3-G34R. It's very rare. Only 7,000 kids in the world have this. The prognosis is very poor. It's about 13 months for children," Jennifer Toner said.

It's a road few patients have traveled. Jaxon is receiving chemo and radiation and hopes to start a clinical trial in which doctors at Children's Hospital Los Angeles will use Car T-cell therapy to super charge his immune cells to fight the cancer.

"We're definitely on the attack. There is a lot of research going on out there. Unfortunately, there's not enough of it," said David Arons, CEO of the National Brain Tumor Society. About 700,000 Americans are living with brain cancer, but those numbers aren't enough to garner the attention and funding needed to find more treatments for brain tumors.

"When someone gets one. They need state-of-the-art treatment. They need clinical trials. They need the best of the best right away. And so we wish there was a lot more money going into research," said Arons.

"We're looking for any help and guidance. A doctor to ride in on his white horse and save the day," said Jennifer Toner.

For Jaxon Toner, his situation is tough but he says he doesn't let it bother him.

"I don't let it bother me," Jaxon Toner said.

Jaxon Toner strives to make the most of every day. This Saturday, his family is supporting the Southern California Brain Tumor Walk and Race in Griffith Park. He believes getting others involved is his best hope.

"This is scary. People should definitely help," Jaxon Toner said.

Jaxon Toner's friends and family have set up a GoFundMe in support of his battle with the disease.