A generation of hope

Maddix was in the surgical suite at St. Jude Children’s Research Hospital®, while in the waiting room, Destiny unraveled. The doctor had taken her newborn son for an exam under anesthesia — the only way to look inside his tiny blue eyes for tumors. 

It sounded straightforward. But now, the minutes seemed to drag on.

Maddix’s dad, Mason, watched the clock, too. More than two decades earlier, he had been diagnosed and treated at St. Jude for the same cancer they were looking for in his son’s eyes. Mason was 2 when tumors had forced the removal of his right eye.

When Maddix was born in October 2024, his parents knew there was a 50-50 chance he carried the RB1 gene mutation that caused his dad’s bilateral retinoblastoma, a cancer that develops in the retina of both eyes of children.

They had lived with that quiet uncertainty before.

When their first son was born in April 2022, his blood was sent to St. Jude for genetic testing. They named him Memphis, after the city where St. Jude is located. A plan was made for an exam under anesthesia for Memphis. For two weeks, they waited. And then, relief: Memphis did not have the RB1 gene mutation. 

After Maddix’s birth, his blood also was overnighted to St. Jude for genetic testing. On their first day home, Destiny and Mason got a call asking them to bring Maddix to St. Jude for the exam under anesthesia. 

They packed up their 5-day-old newborn and toddler for the drive from their home in East Tennessee, taking eight hours by stopping every hour — stretching their legs, steadying themselves for whatever might come next. 

Back in the waiting room, Destiny called the nurses’ station and was assured Maddix was fine. “Breathe,” she told herself, “He’s OK.”

But the result of the exam knocked the breath out of her.

Maddix had tumors in his left eye. 

‘Never stopped me’

Twenty-five years ago, when Mason was a baby, his parents took him from one doctor to another for what they thought was a lazy eye. Then they noticed in a photograph that one of his eyes reflected red from the flash, the other white.

At 8 months old, Mason was referred to St. Jude. Tests showed that neither of his parents carried the RB1 gene mutation, nor did his twin sister, Madison.  

Mason was treated with chemotherapy and radiotherapy, but the cancer didn’t respond the way doctors had hoped. At 2, his right eye was removed to keep the cancer from spreading. 

“That’s all I’ve ever known,” Mason said. “It never stopped me from doing anything I wanted to do.”

He started kindergarten early, got good grades all through school and played sports. In high school, Mason made the football team and wore a visor to protect his remaining eye, a small adjustment in a life that otherwise looked remarkably ordinary.

Mason and Destiny married in 2020 and built a life together. The kind of life where cancer felt like something that had already happened. 

Now, it was happening again.

What's changed — and hasn't

In the 20 or so years since Mason's treatment, St. Jude researchers have advanced the understanding of retinoblastoma, helping show that the disease often begins in utero. Using advanced models that mimic retinal development, scientists watched tumors emerge, mirroring the process that occurs in children born with inherited RB1 mutations.

A companion study, published with St. Jude scientists and collaborators, showed that the earliest cancerous cells arise during fetal life, confirming retinoblastoma doesn’t appear suddenly after birth. For many children, it begins before they take their first breath and can be diagnosed at birth or shortly afterward, as it was for Maddix.

While research has increased the knowledge available to doctors treating retinoblastoma, the disease in some ways remains unpredictable. 

Maddix began chemotherapy within days after the exam revealed tumors in his left eye — he was 13 days old and one of the youngest patients ever treated for retinoblastoma at St. Jude. 

Testing confirmed Maddix has the RB1 gene mutation, and he was diagnosed with bilateral retinoblastoma, though he only had tumors in his left eye. The mutation means he’s at high risk of developing tumors in his other eye. 

Because Maddix’s cancer is inherited, specialists in the Cancer Predisposition Program, established in 2014, use what doctors know about his genetic risk to tailor screenings and monitoring designed just for him. 

Treatment was also more targeted with a laser treatment that is now favored for treating retinoblastoma over radiotherapy which was used to treat his father. Mason’s eye socket is slowly collapsing — a long-term side effect that occurs in retinoblastoma patients who were treated with radiotherapy at a very young age— making it difficult to wear his prosthetic eye and requiring reconstructive surgery. 

Mason is part of the St. Jude Lifetime Cohort Study, undergoing tests every five years so researchers can track the long-term effects of treatment to improve future outcomes. So much has changed at St. Jude in just his lifetime.

But despite the advances, some visits still brought difficult news. In February 2026, doctors discovered Maddix’s cancer had extended to the optic nerve in his left eye, though not penetrated it. Maddix was treated with chemotherapy injected into the artery near the tumor.

“Visit to visit, you just have to brace yourself for whether you will get good news or bad news,” Destiny said. The next visit, the news was bad — and then it got worse.

A test revealed Maddix had no vision in his left eye. The next day, they learned the cancer had crept into his optic nerve — a direct route to the brain. His eye had to come out. “This is saving my child’s life at this point,” Destiny said.

Maddix underwent surgery to remove his left eye in April 2026. For two days afterward, Maddix wouldn’t open his right eye because it tugged on the stitches on his left. 

But soon he blinked his right eye open. By the time they drove home, Maddix was himself again, playing, chatting and asking for a “nack” when he wanted a snack. 

A path forward

While at St. Jude, Maddix has the support of occupational, speech and music therapies that help him better navigate his world. He's particularly fond of music therapy groups, where he can engage with music and connect with other kids.

At home, Maddix loves bubbles, playing in water and chasing Memphis, who’s 4. Memphis wraps his arms around Maddix, and then Destiny, and calls for Mason, “Family hug!”

Maddix is happy, “a big mama’s boy,” Destiny said. Laughing, Destiny told Maddix, “Say, I might be little, but I can put the food away.’” She said, “If you didn’t know, you wouldn’t know he was sick.”

When uncertainty creeps in, Destiny only has to look at Mason. At the man he’s become. At the life he’s built.

There was a time, early on, when Mason blamed himself for passing the RB1 gene, and his experience with retinoblastoma, on to his son. Destiny encouraged him not to. “It’s terrible,” she said, smiling as Maddix reaches for her, “but even in the bad, you can still find the good.”

Maddix returns to St. Jude regularly for checkups as his care team closely watches his right eye. Next, he’ll get a prosthetic eye.

His dad knows what it means to grow up with one eye — what it changes, and what it doesn’t.

“I will tell him there is nothing he can’t do,” Mason said.