Building Strength One Lego Brick at a Time: Ezra’s Pediatric Cancer Story

Ezra Schaefer ringing the bell

For the Schaefer family, Lego bricks have been a constant source of connection, creativity and fun.

It started with dad, Daniel Schaefer, who grew up playing with action figures and the multicolored building bricks. Daniel never outgrew his Lego hobby and passed it on to his sons, Zeke and Ezra. They spend hours together building sets and creating new combinations.

But in the past two years, Lego became much more important to Ezra and the Schaefer family, symbolizing hope, fight and community in their town of Fulton, Missouri, and beyond.

"We used to always tease Ezra that he was the healthy one, our wild child," his mom Sara said. "He was always healthy, running around like a whirlwind playing guitar, torturing his brother and sister and playing with Lego."

Things changed suddenly for the family during summer vacation in 2022, when Ezra was 7. The Schaefers spent a week soaking up their ideal getaway at an isolated treehouse in Arkansas with a lake and hiking trails, and while on the trip, Ezra complained of difficulty peeing.

The next three days changed the Schaefers' lives forever. The Monday after returning from vacation, Sara rushed to get Ezra from summer camp because he was screaming and crying in pain. After an ultrasound the following day, Ezra's pediatrician told Sara she had to take him to Children's Hospital in Columbia.

Barbara Gruner, MD
Barbara Gruner, MD

Ezra had cancer, specifically stage 4 rhabdomyosarcoma. By Wednesday the family had met with his pediatric cancer doctors, which included Barbara Gruner, MD, and Alicia Bach, MD.

"Rhabdomyosarcoma is a cancer of muscle and soft tissue most commonly found in children," Bach said. "In Ezra's case, the cancer was in his bladder muscles which caused a lot of pain and difficulty urinating."

The road ahead was daunting: Rhabdomyosarcoma treatment almost always requires radiation and a year of chemotherapy treatment.

Although it wouldn't be easy, the Schaefers relied on their family, the people of Fulton, and the doctors and staff at Children's Hospital to make sure they were never alone.

Alicia Bach, MD
Alicia Bach, MD

"Dr. Gruner and Dr. Bach were amazing," Daniel said. "Once we got past the bad news, there was never any negativity from their team. Everyone there helped us understand that cancer doesn't equal death, that there are survivors in this."

Ezra had 12 weeks of chemotherapy in Columbia, then he and his mom went to St. Louis for two months of targeted proton radiation therapy, spending Christmas that year alone. They returned to Children's Hospital in 2023 to finish Ezra's treatment, glad to be reunited with family and to reconnect with the doctors, nurses and staff who had come to know Ezra so well.

"They were our extended family," Daniel said. "They really cared about him, he wasn't just a number they checked off doing their job. They always went above and beyond for us."

During the frequent trips to Columbia for treatment and long stays in the hospital, Ezra found lots of ways to stay busy. Action figures and Pokemon were always around, and when he struggled to walk without assistance his doctors and nurses would push him around on his IV pole.

But among all the distractions, Lego was the primary source of relief.

"Lego sets were great for him because he didn't have a lot of energy and he could do a few steps, take a nap and come back and they would still be there," Sara said.

"It was fun, but it was also therapy in a way because it was something that he could do even with the neuropathy from his chemo," Daniel said. "And at the end of the week we'd get a little set as a prize, so it was motivation, he always looked forward to that."

But Lego meant so much to Ezra and the Schaefers that they decided to use those small bricks to build something much larger. And to do it, they had the support of one of their biggest supporters in Fulton, the Super Sam Foundation.

Created in 2014 by Cassie and Matt Santhuff, who lost their son, Sam, to rhabdomyosarcoma, Super Sam's goal is to provide care packages to kids going through cancer treatment and encourage more funding for pediatric cancer research. And it's located, aptly, in downtown Fulton's Brick District.

With the foundation's help, the Schaefers have created a program that sends children small Lego kits that, when assembled, create a cancer ribbon in a color of their choice.

"He wanted this to be his legacy," Daniel said. "That way we could give out that comfort we got, and people could have an outlet with these personalized ribbons."

Sarcomas, like the cancer Ezra has, are represented with yellow bricks, and the kits come in 18 colors to fit 14 different pediatric cancers and four bloodborne illnesses.

Ezra and dad, Daniel, presenting their Lego ribbon board to MU Health
Ezra and dad, Daniel, presenting their Lego ribbon board to MU Health Care's pediatric cancer team.

"Ezra and his family helped emphasize for me how amazing and caring our patients and their families are," Bach said. "The community that continues to be built among our patients to help us provide care in a way that's best for our patients is something I appreciate more and more."

Ezra's treatment was successful, shrinking the tumor in his abdomen and removing the disease from his lungs. He had his bell-ringing ceremony at Children's Hospital on November 15, 2023, and will soon be finished with chemotherapy medications, though his doctors will continue to check in regularly to make sure his cancer doesn't return.

"What they've done for us at MU Health Care is never going to be wiped away," Daniel said. "Their support, their love, their understanding, their knowledge is just amazing. They saved my son's life."