A 5-year-old boy and all those around him found “joy in the midst of loss” through a simple school bus ride to kindergarten.
Bruce Incorporated, who was dying of a brain stem tumor had one big wish — to ride a school bus for the first time to his new kindergarten class at Lexington’s Coventry Oak Elementary. Several Fayette County Public Schools employees were honored Monday at a school board meeting for creating that memory.
In November 2017, Bruce was diagnosed with a rare, aggressive brain stem tumor called Diffuse Instrinsic Pontine Glioma or DIPG. The prognosis for children with DIPG is poor, with essentially a 100 percent mortality rate within nine months to a year of diagnosis.
“I had never heard of it,” said his mother Robin Dodd , who said her son was previously in perfect health. When the symptoms appeared, she thought the boy had had a stroke. “It’s just insidious. We did a clinical trial in New York City and tried experimental medications. He was just getting ready to try a new clinical trial in Cincinnati when he ultimately declined. We never stopped fighting,” she said
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Last spring, a team of school district professionals began the process of assessing Bruce’s needs for kindergarten this fall and developing a plan for him to be successful. At that time, Bruce had completed radiation and was in a ‘honeymoon period’ where the tumor was not growing.
The day that the team met to approve Bruce’s individualized education plan was the day his family received word that Bruce’s tumor had progressed and his symptoms were increasing.
“One of his fervent wishes was to ride a bus to school,” said district spokeswoman Lisa Deffendall. Given a life expectancy of two to four months, “everyone felt a sense of urgency to fulfill Bruce’s dream of riding the school bus to kindergarten,” Deffendall said.
Even though classes had ended a few days before, the transportation department, special education department and staff at Coventry Oak Elementary came together quickly to make June 13 Bruce’s day at school.
“This is a story of creating milestones and finding joy in the midst of loss,” said Deffendall.
Steve Crowe was the bus driver, and “from the time he pulled up at Bruce’s home, to the final hug, and every moment in between”, he made sure Bruce had a great time on the bus, Deffendall said.
“He was so full of life,” Crowe told the Herald-Leader, “He had that spark.”
The staff at Coventry Oak Elementary changed the sign in front of the school to read, “WELCOME TO COVENTRY OAK SUPER SCHOLAR BRUCE.” When the bus arrived at the school, the staff had gathered outside to hold a large banner that read, “We LOVE Bruce!” They included a Batman logo in their presentation in honor of Bruce’s favorite superhero.
“He got to tour the whole school, read books in the library, go to recess. That would have been his favorite. He got to play on the play equipment and play on the slide,” said Dodd. “He felt like a super scholar.”
“It meant so much to our family because it meant so much to Bruce,” Dodd said . “We did everything in our power to make all of his dreams come true. We needed some help to do that. We were just so touched by what so many people came together to do to bring joy to Bruce. None of them had to do it. It’s not in anybody’s job description and they did it anyway.”
Bruce was also surprised by a visit from a Darth Vader character when he finished chemotherapy treatments at the University of Kentucky Markey Cancer Center in January. (Bruce and his brothers all have the last name Incorporated, which their parents decided was easier than hyphenating the parents’ individual last names, the Herald-Leader reported in January.)
“He passed away on Aug. 4, shortly before school” started on Aug. 15, she said.
Bruce’s brain was donated to a center at the Cincinnati Children’s Hospital. “It’s our hope that some day through research they’ll find effective treatments to make life better for these kids,” Dodd said.
In Bruce’s honor, the school district leadership team made a $400 contribution to a group called “The Cure Starts Now.”
“Words are inadequate to express how his story touched our district,” said Deffendall.