Two weeks after being diagnosed with diffuse intrinsic pontine glioma (DIPG), an aggressive type of brain tumor that primarily affects children, Nora Bunn asked to speak to her kindergarten class. She wanted to tell her friends her own story—to control her own narrative—and so she did. It wouldn’t be the last time Nora processed her own experience through her vibrant storytelling mind. The book she authored and illustrated amid her cancer journey, Sparkle of Love, would go on to become the launching point for the locally based foundation created in and for her memory.
Founded by Nora’s parents, Jani and Brent Bunn, Nora’s Sparkle of Love Project raises funds to support families fighting pediatric cancer and to benefit pediatric brain tumor research. The foundation’s goal, through pillars of education, advocacy, and awareness, is to make sure no other family has to walk the path of DIPG alone—and, eventually, to bring a clinical trial facility to St. Louis, so patients in the Midwest need not travel so far for care.
As September marks Pediatric Cancer Month, the couple has spent the summer busy planting the roots for the new foundation, including spreading her book to international audiences (more than 2,000 copies have sold so far); creating a signature wine blend, Cuvée Nora Belle, which will be for sale through St. Louis’ The Wine Merchant and Napoli restaurants, to support the cause; bottling both a spice blend and a Scotch specifically to benefit the nonprofit; and planning a November 7 tasting benefit at The Wine Merchant, among other awareness events such as Spirit Week at St. Louis University High School.
But as her parents explain, Nora is actually the one who blazed the trail for the foundation to exist in the first place.
Nora’s Journey
Nora’s blatant bravery in front of her class might’ve been unexpected, but it wasn’t a surprise—Nora’s parents describe their daughter as a bulldog. Beyond some headaches that were checked by a neurologist, which led to physical therapy a few months prior, there were no warnings that anything was wrong. In fact, right up until physicians detected her tumor in March 2024, Nora was kicking in her Taekwondo class, weightlifting at the gym, and running on the track.
Her family often joked about Nora being clumsy, but a fall on that Thursday was different—she was acting abnormal, weaker, not as present. Her parents took her to SSM Health Cardinal Glennon Children’s Hospital the next day. A CT scan and several labs showed nothing. But the MRI told a different story.
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“My memory is that I screamed,” Jani recalls of the moment the neurologist told them the news. “My knees buckled, and I went down. My husband caught me before I hit the ground, which turns out is quite symbolic to what the journey was going to be. Any pediatric cancer diagnosis is so hard, and this journey with her type of brain tumor felt impossible. I feel like Brent and I caught each other in the last year more times than we can count.”
Google searches provided no hope either, referring first and foremost to palliative care, and one oncologist, unwittingly, told Jani that the only path forward was to make memories. “The best way to put it is shellshocked,” she says. “And nothing in our world has been the same since.”
Brent describes his daughter as a kid who“loved hard and fought hard,” and her parents did the same. Every day became devoted to research, learning more, and navigating a process in which families often don’t receive much support. “If you’re telling me there’s 1 percent hope, that’s hope. But we had to go find it for ourselves, and we did,” Jani says.
At the time, Jani was staying home with the kids, and Brent’s job in healthcare sales was virtual, but he put a pause on travel. That spring, the couple scheduled as many calls with doctors around the world as they could, learning about different trials in which Nora might be a candidate. “It was just us—it’s not like we had a clinical team scheduling these calls,” Jani says. “It was us at the computer. I’m upstairs; he’s downstairs in the middle of doing his job. We started a spreadsheet. We are uncovering nonprofits. Almost all of the direction that we got in those first 60 days came from The ChadTough Foundation, which assigns DIPG families a free nurse navigator.”
Six weeks into her diagnosis, Nora was transferred to St. Louis Children’s Hospital, which assembled a tumor board for her case. Jani and Brent, who spent time early in his career as a nurse, discovered that many resources for DIPG families, including ChadTough, stemmed from other DIPG families who didn’t know where to turn and wanted to help future affected families find a direction and connection. “I at least had a clinical background to understand the medical decision-making and how physicians work,” Brent says. “But at the same time, we still have to manage our family.”
Parenthood Through Treatment
The family fell into a new kind of routine: Nora would get her port put in on Mondays and taken out on Fridays. Every morning, she would go to radiation, where she would be sedated because of her age. “She would wake up, get a snack,” Brent says. “And then…she literally goes back to school. Every day.”
The juxtaposition was an intense reality for the parents, who doubled as coaches, educators, advocates, and more. “You’re trying to save your child’s life, and you still have this ‘normal existence’ for your whole family,” Jani says. “We would do a call with a doctor, trying to understand a trial, and then Brent would go grab a cup of coffee and literally transition to a call for work. That was our every day for a solid 60 days, until we just took the approach of go big or go home.”
The parents wrestled with decisions of which DIPG trial to choose, weighing factors such as relocating the family and which targeted medical approach to pursue. “We landed on doing the CAR T-cell immunotherapy trial in California with Dr. Michelle Monje [at Stanford Medicine], because we felt like that gave her the best chance,” Jani recalls. A mother herself, Monje didn’t sugarcoat circumstances for Nora’s family. “There’s so much we put her through—CAR-T is like a dumpster fire in your brain,” she says, “and so much that we had to hold her hand and endure while we were dying on the inside because that treatment was hard. And Dr. Monje really got that—she’s been trying to cure DIPG for a long time.”
During the first month, the treatment seemed to be working—the tumor was shrinking, and Nora’s “superhero cells,” as she called them, were doing their job. Stanford ended up being a wonderful fit—the staff, nurses, and child life team amazed the family again and again. After the first round of treatment, her parents were able to bring Nora home to a party in their front yard. “Nora said, ‘It’s like I’m famous,’” her mom recalls with a smile.
The family returned to Stanford in September for Round 2—this time, more exhausted and homesick than before. “That’s when our child life specialist, Joy, who is an angel walking this Earth, brought up the idea of writing a book. Nora was a really creative personality, and we had this goal of getting out of the hospital by her birthday, which is what the book became about.”
In the book, a unicorn represents Nora, and an alligator symbolizes Nora’s doctor. “It was a love-hate relationship, you know,” Jani says with a laugh. “Nora wrote this book, and she was going through this treatment where her brain’s on fire for two weeks at a time, and she just powered her way through it to get the book done.”
The motivator worked. “She wanted to get out by her birthday. In the book, the unicorn does get better, and she was also getting better at the time,” her mom says. “She did it; she got out the night before her birthday. We got to have a little birthday party at the hotel, and some of our friends even surprised her.”
Every morning, the then 6-year-old had a fun fact, usually about animals or the solar system, to share with the staff making rounds. Her mom created a game in which Nora would hide her stuffy in the room, and whoever found it would win a prize. But Nora, even at her young age, said her “owie is probably going to get revenge.”
“And it did,” says her mom.
Coping With the Unthinkable
Anyone who has been a caregiver to someone with cancer knows that every part takes a toll, and the grief of loss takes even more.
Nora passed on March 6, 2025.
“There’s no clear answer,” Jani says. “Every day, I wake up, and every day I wake up thinking about God and my family, and I say to myself, There’s much life to live, and there’s much joy to give. I try to make good choices, eat right, go work out. The statistics of couples that end up getting divorced, families that go bankrupt, and everything bad that happens on top of the bad. And Brent and I, we battled that; we argued here and there, especially near the end of her life, but we did OK. So to get through it and to deal and to try to reenergize yourself as a caregiver is just for me, getting up every morning and choosing joy and trying to make good decisions from there that are healthy for me and healthy for my family. And every day is different. Some days, honestly, it’s lying in bed and crying. But then, the next day, I can get up and I can try to be the best wife and mom that I can be, and I’m OK with that because there’s no playbook on this.”
“You have to learn how to be vulnerable. And hopefully, your other kids, like [their older daughter] Reese [and son] Jack, see you being vulnerable and realize it’s OK to do that,” Brent says. “Sometimes, you dream that Nora’s alive and running—she’s fine and healthy. And then you wake up… So it’s leaning on your faith, friends, and community.”
Despite the traumatic journey, the Bunns are aware of how many resources they had at their disposal that many parents go without, such as the ability to pick up and move; flexible work circumstances; a church community at Christ the King in University City; a palliative care team at BJC; and a support system that gathered enough money and help that they didn’t have to worry about finances, home maintenance, or childcare. A foundation even paid for Nora’s funeral.
“That’s really what’s led us to where we are today, with starting [Nora’s Sparkle of Love Project], because it’s such a miserable journey. And we have to join that fight of all the other families that have lost their kids and try to make it different for those ahead of us,” Jani says. “Nora’s diagnosis felt like a dome of darkness laid over us. And the community that surrounded us, from the parish, the school, our friends and family, and quite frankly, strangers—they keep poking holes in this dome of darkness to where there’s always light shining through.”
Brent agrees, citing how many families are forced to make decisions based on circumstances alone: “There’s so much more to it than picking a clinical trial… Do you have the support? Do you have the finances? Do you have somebody who’s going to be able to help you with your other children? Who’s going to manage your home?”
As the family ventures forward with Nora’s Sparkle of Love project, now a 501c3, with a board of people who knew and loved their daughter, they have big plans for her legacy and for making any part of DIPG that they can easier on families enduring what they experienced—locally and abroad. “Nora’s Sparkle just continues to spread,” Brent says.
“Nora wrote her own story, and we just get to share it,” Jani says. “The foundation is her. That is her. When we are, as we say, ‘spreading sparkle,’ I just feel like we’re sharing what she left us. And I don’t have the answers sitting here today. But what I do know is that this is the journey we will be on until our last breath on this Earth to try to make this journey easier for not just families in the United States but families everywhere, because our kids deserve better.”
To find out how you can support Nora’s Sparkle of Love Project, visit norassparkleofloveproject.com.
