DIPG: It was an acronym they had never heard of, one that they didn’t want to talk about. Not with their sons Patrick and Will, 13 and 14, and certainly not with their 7-year-old daughter Maddie, who just the day before had been sedated for a brain scan.
Nora Schmidt knew something was wrong when, after the procedure, the doctors convened in her daughter’s room. The next day, she and her husband, Greg, vowed to keep it to themselves: Maddie had been diagnosed with diffuse intrinsic pontine glioma (DIPG), an aggressive and malignant brain tumor. It was Feb. 22, 2022. She had less than a year to live.
“We were basically told to go home and make memories,” Nora recalls.
But Maddie had already made an impression. On her kindergarten class at the Norris School, who had unanimously named her president because she was the kindest person in the room — or maybe even in Southampton. On her best friend Addison, who loved Maddie so much that they combined their names and answered to “Madison.” On her 18-member family, a lively blend of the O’Hares, the Capshaws, the Schmidts and the Putticks who called themselves the O’Caschmutticks.
She was the baby and she was the boss, particularly on vacations to Lake Sunapee, where she out-swam, out-ran and out-skied her big brothers and her older cousins.
“She was a force to be reckoned with,” says her aunt, Jenn Capshaw. “She forged a unique bond with each of my kids. Everybody felt like Maddie was their person.”
DIPG is a fast and furious illness. The Cleveland Clinic reports that of the 300 children diagnosed each year, most have a life expectancy of 6-11 months. The tumor forms in the brainstem and can affect muscle coordination, balance, hearing and vision. It was Maddie’s sudden strabismus, or crossed eye, that alarmed her parents and led to her diagnosis.
While “DIPG” was not uttered in their home — Greg and Nora didn’t want their kids looking it up on the internet — Maddie knew something was wrong. In her journal, she drew a picture of a teddy bear with a crossed eye. “This is my friend Ted,” she told her mom. “We’re both going to get better because we have the best doctors in the world.”
Nora believed they would find a cure. “Somebody has to be the first to beat this,” Jenn thought. Now she believes differently: “These kids don’t have a fighting chance.”
After being diagnosed in the middle of first grade, Maddie began attending school in the mornings and receiving radiation in the afternoons. Later she would join clinical trials at the Children’s Hospital of Philadelphia. She did not complain about pain. When she lost the use of her right hand, she learned to use her left one. At the end of one particularly difficult day of treatment, she did make one request: she wanted her “boys,” her brothers.
Jenn flew them from Southampton to Philadelphia to surprise her. For Nora and Greg, that would be a cherished memory: watching their teen boys with their kid sister. That summer, they would take a picture, a silhouette at sunset. Maddie would stand on the shore of Lake Sunapee facing the horizon. Patrick and Will would lean down, one on either side of her, to plant a kiss. In the photo, you can only make out their figures, but they are clearly her protectors.
Maddie would always make an impression. In “Uno” games with her parents during treatment, she was a shark who hid wild cards up her sleeve. On a trip to Disney after her radiation, she proudly chanted “O’ – Ca – schmut – ticks!” as loudly as her family, in the middle of the crowded park. During a “Family Day” at a Worcester Red Sox game, she sprinted around the bases to Bruce Springsteen’s “Born to Run.”
DIPG. It wasn’t mentioned on Sept. 11, 2022, when the family held the first Magic for Maddie carnival and 5K. Maddie needed something to look forward to, and if enough people came, they hoped to donate money to other children who were fighting for their lives.
“We wanted Nora and Greg to feel like the whole community was behind them, like Maddie could do any trial in the world,” says Jenn.
In the meantime, Maddie had a few requirements: an obstacle course, slime, and a dunk tank to douse her grandmothers. They raised $50,000 — and the 5K was so full that they had to turn people away.
“It was mind-blowing how many people showed up,” Nora says. “We’re so glad she could see all that love for her.”
On Dec. 31, 2022, Maddie passed away after a swift 10 months. It was that swiftness, and feeling powerless against it no matter how hard they fought, that inspired the family to finally say it out loud: DIPG.
During a phone call with Nora and Jenn, Nora’s voice is hoarse after a weekend at BrainStorm Summit and CureFest for Childhood Cancer in Washington, D.C. It is their mission to share their experience and improve the quality of life for children diagnosed with brain cancer and, eventually, to find a cure.
“DIPG is a monster,” says Jenn. “It is bigger than organizations can handle. It is bigger than doctors can handle.” She and Nora want other children to have a chance.
The second Magic for Maddie carnival and 5K will take place at Ashley Reservoir in Holyoke on Oct. 14. The reason? To fund research for DIPG, to celebrate the community’s kindness, and to honor what would have been Maddie’s ninth birthday with lots of purple glitter.
For more information, or to donate or participate, visit www.magicformaddie.com.
Melissa Karen Sances lives in Easthampton, where she works on her memoir and writes stories about extraordinary people. Reach her at melissaksances@gmail.com.