Molly (Orth) Koenen ’99 has ties to the College of Saint Benedict and Saint John’s University that run deep.
Her grandmother, Josephine Terwey, graduated in 1939 with 12 other women and was the school’s oldest living alumna until she passed away at age 105 in 2021.
Her mother, Ann Terwey Orth, joined the convent at CSB at age 13 and planned to stay through final vows. That plan changed 11 years later when she met her future husband, Don, on a nursing assignment in St. Paul.
Molly’s younger brother, Tim, was accepted at Saint John’s and planned to start in the fall of 1997. Tragically, he was diagnosed with a rare, inoperable brain tumor during his junior year of high school and passed away the following year, while Molly was a sophomore at CSB.
“My parents battled to save Tim’s life,” Molly recalled. “They took him to Duke University in North Carolina to be treated by the leading pediatric neurooncologists at the time. When there was nothing left in the U.S., they took him around the world – from Mexico to the Philippines. They searched for anything that might save his life. They wouldn’t give up on him.”
“We lost Tim on Valentine’s Day, 1997. He never got the chance to start at Saint John’s.”
The unimaginable happens again
Fast forward to 2022. Molly’s 3-year-old niece, Zoey, daughter of Mike and Heather (Isaackson) Orth ’05, began showing symptoms eerily similar to her uncle Tim’s. After several weeks at Children’s Minnesota, she was diagnosed with what the family now knows was a diffuse midline glioma (DMG).
After their own fierce battle, tragedy struck again. The Orth family lost Zoey just four months after her diagnosis – on Aug. 20, 2022.
“The only way I can describe going through something like that is that it dismantles you as a human being,” Mike said. “Piece by piece, it deconstructs you on this slow, terrible march. You watch your child deteriorate and die, and there’s nothing you can do. Your purpose as a parent is to protect your kids – and you just can’t. Then they’re gone, and you’re still this deconstructed person, trying to put yourself back together somehow.”
“I remember thinking, this can’t be real,” Molly said. “There’s no way we can be doing this for a third time. (Their mom, Ann, also lost her battle with lymphoma.) I remember telling God, this isn’t our turn. You’ve got to give this to someone else. But who could you give it to – and what kind of person would you be if you could make that choice? It’s horror all over again. And once again, I can’t protect my only other younger brother.”
A chance encounter
“After we lost Zoey, the least I thought I could do was go back to volunteer at Children’s,” Molly said. “When I did, I happened to meet Dr. Chris Moertel, a renowned pediatric neurooncologist and professor at the University of Minnesota’s Medical School. He and fellow researcher Dr. Michael Olin had developed a drug specifically intended to treat DMGs, called CD200AR-L, through their company, OX2 Therapeutics.”
“Right now, we’re just in phase one of our trial,” Dr. Moertel explained. “All we’re doing is proving the drug doesn’t cause serious side effects. Then we move to phase two, where we test its effectiveness.
“There’s still a long way to go, but the best outcome would be a home run – a cure. The second-best would be to give these children and their families the gift of time. Many children pass away within a year of diagnosis. If we could give them even two or three more years, that would be huge. But the ultimate goal, of course, is to cure this terrible disease.”
“I was shocked to learn that in the 25 years between Tim’s diagnosis and Zoey’s, nothing had changed,” Molly said. “The treatment is exactly the same. We still give kids steroids, radiation and chemo – and then they die. There has to be something better. And I’m on a mission to help find it.”
To learn more about the trial at Children’s and how the Orth alum family is working to help, click here.