Tyler Richards: Fighting Childhood Cancer with Precision Medicine

Age: 6Sacramento, California

When he was just 9 months old, Tyler Richards’ parents began to notice that he was not hitting the normal developmental milestones. Certain skills he had mastered, like holding a spoon or fork, slipped away. His balance declined. His parents, Ronnie and Katie Richards, worked with Tyler’s pediatrician and got him into physical therapy. They took Tyler for many tests and exams that ruled out the possibility of multiple sclerosis or cerebral palsy. He was given leg braces in an effort to address his balance problems, but nothing seemed to help.

“They were putting Band-Aids on and not finding the real cause of these delays,” Katie said. “So, we went ahead and ventured out of our local region and called for another neurologist. He said, ‘You are correct, you need an MRI.’ We went ahead and had an MRI within the month.”

The scan found a tumor that was five inches by five inches and was wrapped around Tyler’s cerebellum, the part of the brain that is responsible for balance, coordination, and other motor functions. Due to its location, the tumor was deemed inoperable.

“The doctors told us to go home and live every minute,” Katie said.

“Knowing our path and our next steps caused me to really respect and embrace the moment,” Ronnie said.

A biopsy followed by genetic testing at the University of California San Francisco found that Tyler’s cancer was slow growing and had a mutation in the BRAF gene. Doctors advised Ronnie and Katie to wait and watch how the tumor progressed. After a year of slow growth, Tyler’s tumor started to become larger, prompting Ronnie and Katie to seek treatment options.

“I was aware of chemotherapy and radiation as cancer treatments. But it was really scary for me to consider,” Ronnie said.

“It was a very hard choice to make. If the tumor was going to take his life, we wanted him to live every moment. We did not want his last days to be spent in hospitals and on chemotherapy,” Katie added.

It was at this time that Ronnie and Katie were given the option to enroll Tyler in a clinical trial testing a combination of dabrafenib (Tafinlar) and trametinib (Mekinist) to treat any solid tumor carrying the same BRAF mutation Tyler’s tumor had. Even though Ronnie and Katie were initially apprehensive, Tyler’s doctor explained the science behind this targeted treatment and why it was the best option for Tyler, and they agreed to participate.

“Science is amazing. Researchers came out with inhibitors to target his exact mutation, and we’ve been on the treatment now for over two and a half years with a stable tumor. It’s incredible,” Katie said. “Tyler has been taking his treatment morning and night. We’re very grateful that it’s a liquid so he can swallow it.”

Katie added: “This journey is not easy. Childhood cancer is not easy, but we feel very grateful for this miracle of science.”

Tyler has experienced very few issues with the treatment, other than skin rashes. Because he is receiving his treatment at home, Tyler is able to enjoy spending time with his older brother and younger sister. “Just having our family understand the situation and experience as much as we can together provides benefits for everyone,” said Ronnie. “It’s not easy for anyone. Everyone has their own stresses, but it helps Tyler feel embraced and comforted.”

Tyler’s treatment allowed him to achieve a happy milestone: kindergarten.

“I think the moment that I really saw a change in him was when he was able to attend school,” Ronnie said.

“Having him graduate kindergarten and hitting a huge stepping stone in life that we didn’t think he was going to hit has given us so much hope and so much excitement, and that’s what we needed,” Katie added.

At this time, Tyler’s cancer is stable. He continues to get his clinical checkups and occasional MRIs.

“We know our life is far from normal. It is difficult for him to go to the doctor, but he does it. Our goal is Tyler’s quality of life and making memories for him. We are very happy as long as he is feeling great. We feel blessed,” Katie said.

Ronnie and Katie have become impassioned advocates for cancer research and finding new cures, especially for childhood cancers.

“We really hope that more research can get done and new drugs are available for children specifically, because a lot of the drugs used for childhood cancer were developed for adults,” Katie said.

“As a parent, I would hope that more funding could be available to educational institutions, cancer research organizations, and cancer research foundations for research and development to occur,” Ronnie said.