In April 2020, Amanda and Adam Petrzelka’s five-year-old son Owen was his typical self: making others laugh with his Rodney Dangerfield-like sense of humor, playing nicely with his little sister and brother, and lighting up the room with his infectious giggle.
“It all happened so fast,” Amanda remembers. “He rode his scooter to his grandparents’ house on Easter Sunday. By Tuesday, he couldn’t stand.”
The family took Owen to Lurie Children’s to be evaluated, where an MRI revealed devastating news: Owen had an incurable brain tumor known as diffuse intrinsic pontine glioma, or DIPG.
DIPG is a rare form of cancer, constituting 15-20 percent of childhood brain tumors. There is no cure or effective treatment beyond radiation therapy for DIPG, which provides only temporary relief from symptoms, if any.
While Amanda and Adam grieved privately, they followed Owen’s lead as he began radiation therapy at Lurie Children’s Brain Tumor Center.
“He really was a wise kid,” Amanda says. “We had to match his strength. When he got sick, he did not complain. He did not know what was happening, or why he couldn’t walk anymore. He called his walker his ‘cute little walker’ and was comfortable being ‘close to the action’ during family kickball games.”
Together, the family focused on creating moments of peace and making memories with Owen. In the summer of 2020, they rented houses in Wisconsin and Michigan, where Owen loved to sit outside, roast endless s’mores, ride pontoon boats, and watch the water.
His dream was to experience life on the road in “a house car,” as he called it, or an RV – so the family rented one to drive from their home in Oak Park to Minnesota together.
Although COVID-19 limited the ability to socialize, Owen visited with his friends in his backyard, playing cards or squeezing water balloons.
“You so often hear stories of survival and warriors and super tough kiddos, being able to get through really hard treatments and later thriving,” Amanda says. “I just kept thinking that this couldn’t be possible: We caught this early, we’re at a great hospital. It was very hard to re-train your brain to stop thinking, ‘We’ll get through the tough stuff, he’ll be well and he’ll go back to first grade.’ We had to accept that we were going to lose him.”
Owen passed away in October 2020 after braving six months of treatment and making joyful memories with his family and friends and the broader community that rallied behind him.
As they continue to cope with the loss of their son, Amanda and Adam are working hard to support families like their own by advocating for pediatric brain tumor research.
Because federal funding supports only four percent of total pediatric oncology research, philanthropy is crucial to the ability to better understand and more effectively treat cancers in children, especially brain cancers.
The family works with Lurie Children’s neuro-oncologists to lobby for more government funding for DIPG. Their advocacy also supports organizations, such as ChadTough Defeat DIPG Foundation and Smashing Walnuts whose work focuses on advancements in treatments and a cure for DIPG, as well as government lobbying, respectively.
“I have to think there’s a reason that Owen is ours and that’s because I will fight and do whatever I can so that other parents don’t have to go through this,” Amanda says. “If everyone grieves in a unique way, my way is that I have to do something immediately. If I don’t try to put this energy toward something greater that will have a bigger impact, I will just crumble.”
As the family pushes for a cure for DIPG, Owen’s memory encourages them. “He was a really awesome kid,” Amanda says. “He was really funny and he always made everybody laugh. He was kind and thoughtful and cared deeply about other people – his friends, his siblings, his cousins, his classmates – the list goes on.”
The Petrzelka family knows the naturally good-hearted Owen would approve of their mission to save kids like him.
This spring, on his kindergarten playground, his school community donated a buddy bench engraved with one of their favorite ‘Owen-isms’: “Let’s be kind.”
Our multidisciplinary team of physician-scientists develops and participates in innovative research to offer new treatments, improve the standard of care and increase knowledge about the biology of brain and spinal cord tumors. Research is a central component to our center’s mission. Our efforts are focused on clinical trials, basic and translational research, and quality of life and patient outcomes research.
Our goal is to optimize treatments for our patients and learn how current treatments affect each patient’s quality of life. We collaborate with the Center for Patient-Centered Outcomes at Northwestern University Feinberg School of Medicine on this research initiative.