Nora’s Story

I texted those words verbatim to a former co-worker in the fall of 2023. At the same time, our then 6-year-old daughter, Nora, was battling a headache that wouldn’t go away. The pediatrician told her dad, Brent, and I, “Hydration and Ibuprofen.” We tried that but it lingered. She started dimming lights at dinner and turning off the TV. We insisted she be seen by a specialist. I scheduled an appointment with a pediatric neurologist, but by the time the appointment came, her headache subsided and overall seemed like her happy-go-lucky self. Nora bounced in, full of sass, and the specialist did a quick neuro exam, “Good news, it’s nothing serious.” I exhaled.

Physical therapy followed for what the specialist chalked up to a neck injury. Her PT noticed her eyes weren’t tracking correctly and referred her on to a brain concussion PT specialist. She completed her appointments with flying colors and was released by mid-February 2024.

March 2024

Over spring break, Brent was traveling for work, so I took our girls to our family farm for the week. It was peaceful and perfect—we fished, laughed, and soaked in a 70-degree week in March. I vividly remember thinking we had such a fun spring break & thanked God for the time.

The next week, Nora was clingy and whiny. I brushed it off as normal 6-year-old stuff, but something in me worried. On Friday, March 22, we were back at the farm. Brent had our girls gathering sticks for a fire when Nora oddly lost her balance. It was then we knew something was wrong.

At the ER, her CT looked clear. They admitted her. An EEG over the weekend showed nothing. Finally, an MRI was ordered for that Monday morning, March 25, 2024. An hour stretched into two. And then three. Brent said to me, “You know this isn’t good.” Little did I know just how bad it would be.

The neurologist walked into her room with tears in his eyes: “It’s as bad as it can be.” The words after that shattered me: a tumor in her brainstem. I collapsed. Brent caught me before I hit the ground. I remember feeling frozen & screaming “NO! NO! NO!” at the top of my lungs.

I knew enough about brain tumors from my time as a Wish Granter for Make-A-Wish to understand the gravity. Within 24 hours, the oncologist told us: “Go make memories.” I could not process that statement. That night, I Googled endlessly. Every article was devastating. No cure. 9 to 12 months. Radiation only—palliative. I read NOTHING that gave me hope we could save our daughter’s life. I remember feeling shock as I lay in her dark hospital room thinking, “HOW? HOW in 2024 am I not able to find ANY HOPE?”

Searching for Treatment

We moved forward knowing it was up to US to find our hope. Nora had a port placed and a biopsy. She started 30 rounds of radiation with daily sedation.

Brent and I turned our world upside down searching for options. In April and May, we met virtually with more than 10 doctors worldwide. Between Brent’s work meetings and travel, our kids’ activities, and overall trying to maintain a normal existence, we were chasing any thread of hope. It was exhausting—taking notes, crying after calls, realizing again and again how little there was out there to treat this devastating diagnosis. There was never clinical guidance on these calls. It was up to us to decipher the information, ask questions to break down the complex science and then determine if it was something we would want to put our child through.

We leaned on other bereaved DIPG parents and an amazing nurse navigator from ChadTough.org who helped us sort through the chaos. Eventually, we narrowed it down to two CAR T-cell immunotherapy trials: Seattle or Stanford. Both risky. No guarantees. We chose Stanford. It meant splitting our family up, flights to the west coast and living with a grueling treatment schedule, but it felt like our best shot.

On August 5, 2024, Nora got her first infusion of “superhero cells.” The treatment caused intense brain swelling. She was very sick and spent days in the PICU. It was brutal. But, six weeks later the MRI showed shrinkage! For the first time since diagnosis, we had hope.

Coming home to St. Louis was a celebration. Friends, neighbors, her school friends filled our front yard upon arrival—it felt like our own personal Army lifting her up. Even a local high school football team let Nora and her sister shave their heads in solidarity. Nora laughed, “It’s kinda like I’m famous.” It was true. We heard from people around the world committed to praying for our girl!

Sparkle of Love

At Stanford for her second round, our amazing Child Life Specialist, Joy, suggested Nora write a book. She jumped at it. She dictated every word of “Sparkle of Love”—the story of a unicorn named Heart Lover who lost the sparkle in her horn and had to take a rainbow cloud to the hospital for treatment. It was her own story, just with unicorns, a castle and sparkle. By fall, it was published. Nora proudly signed books, hoping to give other kids courage when they faced hard things.

The Decline

But DIPG is relentless. It spreads like glitter through the brain, stealing physical ability but leaving the mind intact. After Nora’s 3^rd round of treatment, an MRI showed Car T was not working. The tumor was growing and Nora’s neuro status was declining. Our Oncologist confirmed there we no more treatments available to Nora in the United States. There were days leading up to Christmas 2025 where we were not confident she would make it. At this point, our only option was an overseas drug called ONC201 & 206. We paid out of pocket and a flight attendant transported the drug back. We researched and conducted calls in January and early February with clinicians in Spain and Germany. We prayed her health would hold and we could get her there for experimental treatment.

Nora went to school when she could & conducted “author signings” at this same time. She worked hard in therapy at Ranken Jordan, where her therapists became like warriors alongside her. But, Nora’s declining neurological status was enough to know we were quickly losing ground to the tumor. By mid-February 2025, it became apparent WE would not be able to save our girl but that our beautiful girl would be saved—just not in the way we had prayed for.

Her Last Days

On March 4, after a long day of snuggles, Brent asked, “Nora, we’ll take you anywhere. Where do you want to go?”

Her answer: Target. She wanted to spend a therapy gift card she’d earned. We loaded up, and she knew exactly what aisle, exactly what she wanted. We laughed. It felt normal.

Two days later, on March 6, at 11:28 p.m., Nora took her last breath in our home. Surrounded by me, her dad-Brent, her big sister-Reese, and her brother-Jack, we handed her over to Jesus finding peace she was now healed.

Nora’s Sparkle

Nora fought so hard to live. Even when sick, she thought of others—once insisting we bring food and clothes to a homeless man she’d seen near the hospital. That was our girl.

She made more impact in 7 years than many do in a lifetime. Our hearts will always ache with her loss, yet it is our deepest privilege to share her sparkle with the world. We created Nora’s Sparkle of Love Project, a 501(C)(3) non-profit to support other brain cancer families and fund pediatric brain cancer research. We ran out of options for Nora, and we are determined to change that for those who come after.

As Brent says: “Nora wrote her own story. It’s our duty to share it.” She left us so much sparkle to spread.