After Son's Death from Brain Cancer, Mom Channels Grief into Action

When the unimaginable happens and the grief threatens to destroy us, some people find a spark from within to pull themselves from the dark. That’s the inspiring story of Gaby Amador, whose son Benjamin was diagnosed on Feb. 15, 2019, with an aggressive and rare brain cancer known as diffuse intrinsic pontine glioma (DIPG). He was 4 years old.

“Benjamin loved school. He loved dinosaurs. He enjoyed playing catch with his dad and loved baking cookies at home. He loved his younger brother, Brandon,” Ms. Amador says softly.

DIPG is an inoperable, incurable tumor. Located in the brainstem, it impacts vital neurological functions such as breathing, heart rate and motor coordination. About 300 children are diagnosed with DIPG each year in the U.S. Typically, children live nine to 12 months after diagnosis.

(Watch now: When the unimaginable happens, some people find a spark from within to pull themselves from the dark. Meet Gaby Amador, whose 4-year-old son Benjamin was diagnosed with an aggressive and rare brain cancer. Video by Eduardo Morales.)

A Clinical Trial Offers Hope of Extending Her Son’s Survival

While the news of Benjamin’s illness was frightening, Doured Daghistani, M.D., a pediatric hematologist/oncologist at Baptist Health Miami Cancer Institute, told the Amadors about a clinical trial being offered at the Institute. “This was one of the few centers offering the trial. It was imperative for us to be close to home and our family, so we enrolled Benjamin,” the West Kendall mother says.

The ONC201 in Pediatric H3 K27M Gliomas trial studied the drug dordaviprone for its safety and with the anticipation that it could extend life and stop the progression of DIPG following radiotherapy. “We did not know what the outcome would be, but that we had an option here at home offered us some hope,” Ms. Amador says.

Going to Miami Cancer Institute the Highlight of Her Son’s Day

Benjamin’s care was led by Matthew Hall, M.D., lead pediatric radiation oncologist at the Institute. Every time Benjamin came to Miami Cancer Institute for radiation therapy — 42 rounds — it was memorable, Ms. Amador says.

“Each morning, Benjamin and his brother Brandon would be greeted by the valet and security guard. They would place them in a little remote-controlled car that would go from the entrance all the way to the radiation room. It was the highlight of their day, a moment of happiness.” They also loved the therapy dogs who routinely visited.

The compassion shown the Amadors was exceptional, she says. “Benjamin was heavily sedated for treatment, but the child life specialists would come in with a toy for him every day and it would just brighten up his day. He had a very special bond with a nurse who was part of every milestone. He invited her to his birthday party and she actually came and celebrated the day with him. And when he rang the bell, it was a day of victory, a day of celebration to honor his fight and do it with his family and team at Miami Cancer Institute.”

Finding a Way to Carry On and Help Others

Benjamin was 5 when he died at home, surrounded by his loving family, on Nov. 11, 2020. “With Benjamin’s treatment, he defeated the odds and fought for 21 months,” his mother says. The family cherished their “extra” time, even enjoying a Disney cruise together, thanks to the Make a Wish Foundation.

After her son died from an aggressive and rare brain cancer, Gaby Amador channeled her grief into action, establishing the Benjamin Strong Childhood Brain Cancer Foundation

With Benjamin’s death came an eventual realization. “My whole world came down,” Ms. Amador recalls. “I had just lost my son. I needed time to find my strength, my peace, my identity as a mother. I knew at some point I needed to face the world again, and when the time came, I wanted to find an opportunity that gave me a sense of hope, a calling, a purpose in life where I could show my compassion and my empathy just like it was shown to Benjamin.”

As time passed, with her husband Charlie’s support, and her son Brandon in school, she focused on two ways she could make a difference. First, she applied for and started a job with Baptist Health in 2023 as a patient financial advisor, helping patients understand their insurance benefits and eligibility.

Her personal experience as the mother of a young patient has given her a unique perspective. “I’m reminded of the importance of human connection,” she says. “I may not see them in person, but I’m still able to help and show compassion.”

She recalls the daughter of a patient sharing with her that her mother was in hospice and was reminded of her own family’s experience while Benjamin was in hospice. She let the woman talk and cried with her over the phone.

Honoring the Memory of Her Young Son

In addition to her job, Ms. Amador continues to raise awareness about childhood cancer and stays involved with families whose children have DIPG. She established the Benjamin Strong Childhood Brain Cancer Foundation and, to honor Benjamin’s life, she began an annual toy drive, collecting and distributing toys to young patients at Miami Cancer Institute and Nicklaus Children’s Hospital.

“Each year on Ben’s birthday, we collect hundreds of toys, coloring books, stickers, crayons and gift cards for patients going through treatment,” she says. “It’s a little extra emotional support for families.” The toy drive is now in its fourth year.

While others call Ms. Amador a hero, she says she is just a mother who wants to give back to the community. “Benjamin is my greatest inspiration, and faith is at the center of my life. We felt everyone’s prayers. Advocating for childhood cancer is now a calling in my life and bringing a moment of happiness to a child in treatment helps fulfill the emptiness of losing Ben.”

Doured Daghistani, M.D., a pediatric hematologist/oncologist at Baptist Health Miami Cancer Institute

Matthew Hall, M.D., lead pediatric radiation oncologist at Baptist Health Miami Cancer Institute