St. Jude childhood cancer survivor (literally) on top of world

Tom Racek stood on top of the world, or at least that’s what it felt like. 

It had taken seven days of climbing to reach the summit of Mount Kilimanjaro, the largest free-standing mountain in the world, rising an imposing 19,340 feet into the skies above northern Tanzania.

Now Tom looked out at the world stretching out below him, holding tight to a small white flag from St. Jude Children’s Research Hospital.

The sun rose in an explosion of fiery orange, red, yellow, and dusky pink and blue.

Tom and his group had followed the Lemosho Route, considered the most beautiful, hiking through lush rain forest where he spotted black-and-white colobus monkeys, across the heath-covered Shira Plateau, skirting a 300-foot lava tower in the alpine desert, and up into a bitter-cold arctic tundra to reach the top, Uhuru Peak.

This was his second summit of Mount Kilimanjaro. 

The first time, in March 2022, Tom, a filmmaker, had been hired to shoot a documentary about 24 living organ donors making the trek.

“To be honest, I had no clue what I was getting into,” Tom said.

He was in good shape, so he thought he’d be fine. By the end of the first day, he wasn’t so sure.

A guide told Tom, “This will be the hardest thing you have ever done in your life.” 

Tom had smiled. He’d done something harder.

Tom was almost 3 when he was diagnosed with retinoblastoma, a rare cancer of the retina, and treated at St. Jude. 

This time, in March, Tom climbed Mount Kilimanjaro in part to mark 25 years since his diagnosis.

When the climb was hard — the path steep, the air thin, the days long — Tom kept moving. An object in motion stays in motion.

“I really wanted to reclaim power over that day and be thankful to God and for the individuals who helped me,” he said.

Because while cancer had taken his eye, it left him with so much more.

A frightening diagnosis

Tom was four months shy of turning 3 in April 1998 when his mom, Phyllis, noticed a glimmer in his right eye.

She took him to one doctor and then another. Neither saw anything wrong and told Phyllis not to worry. She worried. 

Phyllis, an FBI agent at the time, took Tom to a third doctor she knew through the agency, and refused to leave until he dilated Tom’s eyes for a better look. He recognized the retinoblastoma.

Phyllis burst into tears, prompting Tom to jump off the exam table, kick the doctor in the leg and yell, “Don’t hurt my Mommy!”

An ophthalmologist across the street referred Tom to St. Jude.

Phyllis had once watched a television program about kids with cancer at St. Jude and thought, “How can you live through that?”

She became a monthly donor to St. Jude, never imaging she would find herself there.

When Tom, Phyllis and his dad, Scott, a Secret Service agent, arrived at St. Jude, medical staff were waiting for them, full of assurances.

It’s how the family would live through it.

‘He’s whole again’

Tom began chemotherapy in May 1998. When the cancer didn’t respond, Tom underwent internal radiation therapy, a small chip of radioactive material inserted in his eye, in January 1999. 

Even though he was young, Tom remembers much from his time at St. Jude.

He and other patients painted the palms of their hands — he picked purple to match the mask worn by his favorite cartoon ninjutsu-trained turtle — and pressed them on a wall to make a mural.

Tom remembers the nurse who gave him candy, and the woman in the gift shop who always said hello.

When his cancer showed signs of spreading, Tom had surgery in April 1999 to remove his eye.

On his last day of chemotherapy in June 1999, staff showered him with confetti and sang: 

Oh, we love to see you every day, but now’s the time we get to say

pack up your bags, get out the door,

you don’t get chemo anymore!

Tom bolted from the exam room, the staff cheering, as his mom chased after him.

When Tom first met with the ocularist who would make his prosthetic eye, he asked his mom and dad, “Is this where they make eyeballs?” He wondered why they’d gone through treatment if he could just get a new one. 

The first time Tom put in his prosthetic eye, he remembers his mom crying, happy tears this time.

“You made him whole again,” she told the doctor. “He’s whole again.”

An object in motion

Tom left St. Jude to go home to Arkansas with no evidence of cancer remaining. He would return for regular checkups. 

The loss of his eye didn’t slow Tom down. “It was like, an object in motion stays in motion,” his mom said. 

Phyllis had been like that growing up, too. She was an athlete who became a teacher and coach and took up bodybuilding before becoming an FBI agent. She retired from the FBI to care for Tom, and later returned to teaching.

Now Phyllis coached her son, taking him swimming, enrolling him in martial arts and lacing him into ice skates. “We just really went after it,” Phyllis said, though carefully, protecting his remaining eye.

She was determined: “We will grow through this cancer experience and be thankful for life, experiences — and a second chance.”

Although very loving, Phyllis didn’t cut Tom any slack. She told him, “Nothing will stop you.”

No stopping him

Nothing stopped Tom.

At 5, an exam revealed Tom’s vision in his remaining eye was 20/15, better than perfect, and he took up fencing, later qualifying for Junior Olympics — twice.

Tom was recruited to fence at Vassar College in New York, where he was voted captain by his teammates in his junior and senior years and received Vassar’s prestigious Coaches Award.

Tom earned his bachelor’s degree in film and Hispanic studies in 2018. A year later, he got a Master of Fine Arts from Full Sail University in Florida.

Tom rarely talked about his childhood cancer. He didn’t want to be treated any differently than anyone else. 

“It’s not like I was ashamed, but I didn’t want people to feel pity for me,’” Tom said. “I’m fine.” He didn’t believe he deserved accolades, either. 

“I didn’t want something that happened to me as pure fate to be my defining point,” Tom said.

His mother couldn’t lament the loss of Tom’s eye. She knew it could have been worse. Some of Tom’s young friends at St. Jude didn’t make it.

Tom remembers being sad about losing his eye once when he was about 6 and on vacation with cousins. Looking in a mirror, he covered his left eye with his hand, hoping somehow that he would be able to see out of his prosthetic.

In that moment, Tom heard his cousins outside, playing and laughing. He said he realized then, “I belonged out there, in life, playing with them and not feeling bad for myself.”

But cancer did change Tom. It made him resilient and gave him a quiet confidence.

“In a way,” he said, “I worked harder because of it.”

Embracing life

At 24, Tom started  a documentary and production company. He’s also a stunt performer, mostly for fight scenes but once playing a zombie in the star-studded comedy “The Dead Don’t Die.”

Tom, 28 now, is part of St. Jude LIFE, a research study that brings long-term childhood cancer survivors back to St. Jude for regular screenings. 

During a checkup at St. Jude when Tom was 18, he met a little boy who also lost an eye to cancer. 

“Hey, buddy,” Tom said. He tapped his own prosthetic eye. “It’s going to be OK. You’ve got tomorrow.”

The boy’s face lit up. Tom told him, “You have one eye so see twice as much with that one eye. Nothing is going to stop you.”

Tom believes that. “I think you’re stronger than what you give yourself credit for,” he said.

So Tom goes for it, in all aspects of his life. “What do I have to lose?” he said. “You never know when your number is going to get pulled. You have to embrace life.”

Tom got to live so he lives, moving from one adventure — big and small — to the next.

There’s so much Tom wants to do — and see. 

An object in motion stays in motion. 

Tom keeps moving.

On top of the world

The documentary Tom shot the first time he climbed Mount Kilimanjaro was shown in London and at film festivals across the country, winning Best Short Documentary at the Central Florida Film Festival.

The second time, Tom carried a 45-pound camera bag, too, shooting a second group of living organ donors making the climb. He carried the St. Jude flag in his backpack. 

The organizers of the trip surprised Tom with encouraging video messages they had collected from his family and friends to mark the 25th anniversary of his cancer diagnosis. He watched them on the night they summited.

“Just to be in that supportive environment, it was incredible,” Tom said. 

The group started hiking at 10:30 p.m. to reach the top at sunrise. 

It was the most brutal part of the ascent, climbing 4,000 feet in elevation and pushing against 35-mph winds in the freezing cold with only dim headlamps lighting their way.

Tom saw much of the climb through the lens of his cameras, but at the summit, he put his camera down, taking in the surreal view for the second time. 

“It makes you think back to all the moments leading up to that point in time, what a wonderful world it is and what a blessing it is to be a part of it,” Tom said.

Seeing twice as much with one eye, just as he told the little boy at St. Jude.