Dr. Fred Gentili’s story as shared by Gina Gentili.

 

It was Gina Gentili’s birthday when her husband, Dr. Fred Gentili, called her from the hospital.

Dr. Gentili, a renowned neurosurgeon, was scheduled to perform a 15-hour surgery on a patient with an acoustic neuroma tumour. It was strange for him to call her during the day, let alone before a surgery, as each let the other focus on their work.

“I said, ‘Why is he calling me?’” Gina, a lawyer, recalls. “He asked if I was sitting down.”

He’d had some trouble parking earlier, which made Gina think he might need new glasses.

Instead, Dr. Gentili broke the news that he had two lesions on his brain and they appeared to be glioblastoma. After 20 years together, and having watched the many presentations Dr. Gentili gave throughout his career, Gina had a sense of what they were in for.

“I broke down,” Gina says. “I said, ‘There’s no way.’ But when I went to the hospital and I saw all the doctors around him and I saw the look on their faces, I knew there was no mistake. From that moment on, I vowed to become Fred’s frontline caregiver, as Fred had been for so many people. He actually said to me, ‘I’m glad this happened to me because I’m able to learn the patient experience.’”

 

The caregiver journey

Gina had already been a caretaker for her mom, who suffered a ruptured appendix and was on life support for several weeks.

“Luckily, with Fred by my side, my mom made it through,” Gina says. “Little did I know, that was my training for when I got Fred’s call. I walked the walk with him as a surgeon, as a caregiver and as a patient.”

Gina praises her husband’s positivity through it all, though she admits she struggled with her own fears every single day of the journey.

“I was scared that he would look at me one day and not know me,” she says.

Gina attended her husband’s appointments, gave him injections at home, and managed his medications, all while working each night.

“For three years, I was sleeping just one hour a night, believe it or not,” Gina says.

She bought a hospital bed and positioned it in their bedroom, trying to keep her husband comfortable and in a familiar setting.

“Fred told me years ago that when a person has a diagnosis, they just want the normal things,” Gina says. “It framed how I approached the journey. I decided I was going to try to keep things as normal as I could. I did not let the diagnosis take ownership of our lives. And I refer to it as ‘the diagnosis,’ because it was there, but it wasn’t going to overpower us.”

 

The patient and the surgeon

As Dr. Gentili’s journey carried through the COVID-19 pandemic, his colleagues and friends would visit from the deck at their home. It was a way to keep that normalcy, as much as possible.

“My approach was, ‘I don’t know how much time I have with him, but I know I have today,’” Gina says.

“I wanted to make every single day we had together special and not think about two or three months ahead. That, to me, made a difference, because we could laugh and we could still enjoy our time together.”

A video by UHN Foundation shares a powerful reference to Dr. Gentili mentioning his own surgery experience, in which he commented to his surgeons that he trained them and so he’s the patient, but also the surgeon.

“Fred was a natural-born teacher,” Gina says. “He enjoyed teaching and improving what he was teaching firsthand. He had front-seat knowledge.”

She points to Dr. Gentili’s post-surgery example, where he had to have his head wrapped. Dr. Gentili’s patients would often complain about their headwrap being too tight, to which Dr. Gentili agreed. It was moments like this where he could relay the patient experience to his colleagues, while truly caring about others who were going through the same thing.

“The day after Fred had his brain surgery, he was very agitated,” Gina says. “I said, ‘What’s wrong?’ And he said, ‘I have patients on this ward. I need to know they’re okay.’”

 

“Why not me?”

Even as a doctor who had treated those patients, he never expected special treatment himself. Whether visits to the deep-vein thrombosis (DVT) clinic or physiotherapy, Dr. Gentili waited his turn without complaint.

“I would say, ‘Why you?’” Gina recalls. “And he would say, ‘Why not me, Gina? Why not me?’”

Dr. Gentili passed peacefully on January 15, 2022, with his family by his side.

“The night before he passed, he was calling my name,” Gina says. “I was so scared he wouldn’t remember me, and yet, he was calling my name.”

His sons were there, as was Gina’s mother, as they said goodbye.

“Fred was a once-in-a-lifetime love,” Gina says. “I can’t say I’m over that. I can’t replace that. My solace is that he loved me for two lifetimes.”

 

Finding purpose in advocacy

Gina turned her energy towards helping others in health, earning a Certificate of Specialization in Health Care Leadership from Harvard Business School online. Additionally, in Fall 2024, she received her certification from the American Patient Advocacy Certification Board. As a board-certified patient advocate with a legal background, Gina works with patients and families navigating their own journeys.

“It could be as simple as a phone call,” Gina says. “It could be working with the health-care team to make sure the patient’s voice and their desires are heard. It’s something I’m passionate about and it’s part of Fred’s legacy.”

Gina has advocated for patient rights around the world, speaking in places as far-reaching as Rome, India and Italy—Dr. Gentili’s home country.

“I talk about the importance of supporting not only the patient, but the caregiver as well,” Gina says.

She’s sat in waiting rooms, listening to patients talk about going back to work after their treatments and caregivers expressing sheer exhaustion. She’s waited at a pharmacy for medication, and witnessed families dropping their loved ones off at appointments while worrying about parking spots and fees.

“The stress and the tears every time I had to drop off my husband, who has a brain tumour and who is wobbly on his feet, and I just have to drop him off and hope and pray he doesn’t fall because there’s no place for me to park,” Gina says, of her experience throughout her family’s journey. “It really raised my awareness of what patients and families go through, that I wish they didn’t have to.”

 

Sharing her experience with others

Gina took what she learned as a caretaker and applied it to a booklet, Journey of Love: A Caregiver Guide, that she distributes to others on a similar path. In it, she discusses the phases a loved one might go through, from pre-surgery to post-surgery and beyond. She also shares samples of templates to track medication and advice on caring for the caretaker.

“Caregivers are so often exhausted, grieving, scared,” Gina says, “but you want to show up with joy for your loved one and let them know they’re still a part of this world. It’s tips and tricks for the caregiver and for the patient to keep things as normal as possible through the journey.”

Gina also compiled lessons from her husband’s teachings into another booklet, Lessons Learned: From Master Surgeon to Model Patient. Dr. Gentili presented lessons he learned from his patients at an international conference, and those lessons became the basis for Gina’s document.

“By sharing Fred’s lessons learned as a surgeon and as a patient,” she writes in the booklet, “we keep his legacy alive.”

Creating together was part of their long-term plan, with the couple discussing a potential consultancy and online lectures where people could ask questions from a medical and legal perspective.

“We did everything together,” Gina says, “and then I lost that.”

Through her writing, her advocacy work, and by simply talking about the person who made such a significant impact on her life and the lives of so many others, Gina keeps her husband’s memory alive.

“No matter where I go, people approach me and say, ‘He saved my uncle’s life,’ or ‘He saved my father’s life,’” Gina says. “So, that is wonderful.”

 

Living out his dream

While Gina says her husband was a “born neurosurgeon,” he dreamed of being a professional soccer player as a child. It was his mother and his teachers, who saw how bright he was, that encouraged him to explore a career in science. Having moved to Toronto as a child, Dr. Gentili completed his neurosurgical training at the University of Toronto before training with professors Gazi Yaşargil in Zurich and Lindsay Symon in London.

Though he’d moved to follow his later dream of becoming a neurosurgeon, Dr. Gentili was proud of his heritage and never forgot his early days of growing up on a farm in Italy. He returned to his hometown every year, helping people in his hometown for his entire vacation. He received many awards for his neurosurgical contributions to Italy, even receiving a knighthood from the Italian government.

“The little pin he received is in my jewelry box,” Gina says. “He wouldn’t wear it. He was very modest.”

 

The ‘Fred’ his family knew

The man who many credit for saving their lives was also a man who cared deeply about his community, donating his time and earnings to causes that were close to him, such as at-risk youth. He loved jazz, opera and the ballet. He enjoyed restaurants and good food. He was a doting parent, grandparent and husband, always making his family laugh.

“He instilled in me that you don’t know what tomorrow will bring,” Gina says. “There’s no such thing as Sunday clothes—not wearing this, not eating that. He encouraged me to enjoy life and take every day as it comes. He’s utterly irreplaceable on every level. Irreplaceable.”