GRYFFIN'S STORY
Gryffin has been a fighter for almost as long as he has been alive.
On February 22, 2022, at just seven days old, Gryffin was diagnosed with retinoblastoma. What started in one eye eventually affected both, and genetic testing confirmed a germline RB1 mutation. Over the next two years, he underwent 18 laser treatments, countless exams under anesthesia, scans and appointments. On February 22, 2024, we finally celebrated two years since his diagnosis and remission. We hoped cancer would become something we monitored rather than something that controlled his childhood. Unfortunately, that wasn't the end of Gryffin's fight.
On April 28, 2025, when Gryffin was three, a routine scan changed everything. Gryffin had developed a pineoblastoma, a rare and aggressive brain tumor associated with his RB1 mutation. His diagnosis was now considered trilateral retinoblastoma.
In May 2025, Gryffin began three rounds of induction chemotherapy. He then went through three separate rounds of high-dose chemotherapy, each followed by a stem cell transplant. His little body was pushed to its limits. He experienced severe mucositis, infections, malnutrition requiring TPN, significant neuropathy and tremendous pain requiring medications including fentanyl. Some of his chemotherapy even came through his skin, requiring baths every six hours around the clock to help prevent burns.
After his third transplant, we desperately wanted to believe the hardest part was behind us. Instead, a follow-up scan showed an area concerning for potentially more cancer. By then, Gryffin's body had already endured so much chemotherapy that additional chemotherapy was not an option. We were faced with another impossible decision, and ultimately chose to move forward with radiation.
Beginning in January 2026, Gryffin completed six weeks of radiation to his entire brain and spine, with an additional boost to the area of his original tumor. On February 13, 2026, he rang the bell. Two days later, our fighter turned four.
What we have learned is that ringing the bell doesn't always mean the fight is over. The treatments that helped save Gryffin's life also left lasting damage. He now has moderate-to-severe hearing loss, significant neuropathy, weakness, pain and fatigue. He has needed physical therapy to rebuild strength and continues to be followed by multiple specialists. And then, during the summer of 2026, we began watching our little boy change.
His short-term memory declined significantly. He began asking the same questions repeatedly, forgetting where we were going and struggling with routines and skills he had previously known. We saw changes in toileting, behavior and impulse control. At times, things he had once been able to do independently suddenly seemed unfamiliar to him.
Testing has raised concerns for radiation-related injury to his brain, while his medical team continues investigating whether inflammation and swelling may also be contributing. A recent steroid trial has given us some encouraging glimpses of improvement, but we still have many questions and many unknowns.
So today, Gryffin is still fighting. His fight just looks different now. There aren't currently bags of chemotherapy hanging from an IV pole or weeks spent isolated in a transplant room. Instead, there are therapies, medications, specialists, scans and parents who continue to ask questions and advocate for every possible opportunity to help him heal.
And through every chapter, Gryffin continues to remind us that he is so much more than cancer. He is a funny, loving four-year-old who loves Halloween, monsters, tractors, animals and anything that goes fast. He loves adventures, playing with his brother and finally getting to do ordinary things like going to preschool and playing on a playground.
Gryffin has been fighting since he was seven days old. Cancer has taken pieces of his hearing, his strength, his memory and abilities that once came easily to him, but it has never taken away who he is.
We don't know exactly what comes next. We continue to take things one scan, one appointment and one day at a time. His team is now monitoring a spot for potential melanoma and he has scans under anesthesia September 4th, where we will check the status of his brain and eyes.
What we do know is that Gryffin has never had to fight alone. He fought through cancer. Now we will fight alongside him through everything that comes after it, helping him heal, advocating for what he needs and making sure that, through all of it, he still gets the childhood he deserves.