Gary Sinise, the actor and director best known for his portrayal of Lieutenant Dan Taylor in the movie “Forrest Gump,” spoke movingly about his charity work, his eponymous foundation, caregiving and his son’s battle with a rare cancer today at a general session of Asembia’s AXS25 Summit in Las Vegas.

Interviewed by Fox News anchor Shannon Bream, Sinise described how he got involved in charitable work supporting the families of veterans and first responders, the variety of the efforts supported by the Gary Sinise Foundation, and the meaning it has had for him. Sinise, who was nominated for an Academy Award for his role in “Forrest Gump,” said that character has been inspiring and helped spur his philanthropic efforts.

“When Lieutenant Dan walked into a hospital room, I mean, it was kind of a big deal,” said Sinise. “They would want to talk about the story of Lieutenant Dan, which is a very positive story. If we look at what happens to Lieutenant Dan, at the end of the movie he's standing up again, he's got new legs, he's married, and he's successful in business. It was a story of a Vietnam veteran that we hadn't seen before.”

Sinise’s 33-year-old son, Mac Sinise, died Jan. 5, 2024, approximately five years after he was diagnosed with chordoma, a rare type of sarcoma that grows at the base of the skull and in the sacrum of the spine. Sinise said his son was diagnosed a month after his wife, Moira Sinise, was diagnosed with stage 3 breast cancer. His parents also had medical issues, he said.

“I mean, it was a lot. It was like a tornado blowing into the Sinise family, and I feel like I lived in the pharmacy for many, many years. Going to the pharmacy. Get very, very familiar with your pharmacist. They become like a member of the team. And you know, because I feel like I was at the pharmacy every other day picking up medications for somebody,” he said.

Sinise said his son, who composed music and played the drums, experienced pain for years before the chordoma was diagnosed and that he and his family chalked it up to the lingering effects of a bicycle accident. The tumor was the size of an orange when it was discovered on his sacrum.

Approximately 300 new cases of chordoma are diagnosed in the United States each year. According to the National Cancer Institute, chordomas form from the leftover cells from the notochord, the collection of fetal cells that turn into the spine. Another name for chordomas is notochordal sarcoma. Sinise said that 70% of chordomas are treated successfully with surgery, but his son Mac was in the remaining 30%. He was treated surgically in September 2018. In May 2019, the cancer recurred.

Shannon Bream and Gary Sinise leave the stage after their fireside chat conversation this morning.

“That's under 100 people per year that are dealing with metastatic chordoma,” Sinise said. “So, obviously, there are no pharmaceutical companies that are developing drugs specifically to deal with 90 people per year. So you're at the mercy of what's out there.”

His son was treated with 25 different cancer drugs, had radiation and had multiple spine surgeries, according to Sinise. Early on, he was treated with Erbitux (cetuximab) but found the side effects intolerable, Sinise said. “Your face just blows up. It turns all red. Pimples. It was so hard on him in the beginning that he stopped the treatment.” Mac was prepared to try Erbitux again just before he died, Sinise said.

Sinise said he is helping support research at the Broad Institute in Cambridge, Massachusetts, that involves the painstaking process of testing its library of between 5,000 and 6,000 drugs against chordoma cell lines. His family provided some tumor tissue from Mac. “I knew in my heart that Mac would want us to do that so that we could provide that in hopes that researchers might be able to use that to discover something to help chordoma patients in the future. So maybe Mac, by doing that, he’s providing hope for future patients.”

Not giving up

Sinise expressed gratitude for the care and attention that an oncologist — he didn’t name him — at Providence Saint John’s Health Center in Santa Monica gave his son. Sinise described him as being “very experimental.”

“Everybody saw the scans. They knew what we were fighting,” Sinise said. “Yet this particular oncologist said, ‘Mac, as long as you want to try, I'll keep trying with you.’ And so he kept providing us with hope that there was going to be another drug.”

Sinise said he believes that it is especially important for patients with rare diseases to have a doctor like his son had. “Having the doctors in your corner and having that hope that they will find something for you and they won't give up, that's a critical element of you staying in the fight yourselves,” he said.

As a caregiver, Sinise said he worked to relieve his son of having a serious cancer diagnosis. “I tried to take on all the medical stuff so that he could just have a happy day each day and not think about cancer every day.” Sinise said he dealt with the doctors and the nurses and the scheduling of appointments.

Through his work for members of the military and for veterans, Sinise said he has firsthand experience dealing with families. He described caregivers as “frontline defenders.”

Sinise’s voice dropped when he started to talk about some regrets.

“When it was over, there were a lot of things that I wished that I said or asked him about or done for him that I didn't, and so for caregivers who are dealing with a challenging, tough time, as much as we're pushing through and never giving up … I felt like if I had that talk with Mac, 'What do you want me to do if this happens or if that happens?' I felt like that would signal that I was giving him, and I never wanted to signal that to him.”

Sinise added, “You know, we're all on a very thin, thin line. So never take for granted those precious moments with our loved ones if they're sick and going through a difficult time, to extend that hand, wrap that arm around them, and tell them you love them, and maybe ask them something that you'd wanted to that you never had, without letting them know that you're thinking about another alternative other than victory.”