For nearly a year, the Pennington family has held onto hope as their 3-year-old son, Bowen, battles a rare and aggressive form of brain cancer.Theres a one percent chance of survival, Bowens mother, Cierra Pennington, said. Weve kind of leaned on the fact its not zero. Thats the main goal. Its not zero.Bowen was diagnosed with diffuse intrinsic pontine glioma, or DIPG, in late 2025. LEX News first shared his story in December, just days after his diagnosis.According to his family, Bowen is one of 10 children in Kentucky diagnosed with the aggressive brain cancer. KY toddler with brain tumor gets monster truck birthday partyPennington said the diagnosis came without warning. What the family expected to be a routine trip to the eye doctor instead changed their lives.We thought it was just another normal day, she said. We woke up for the eye doctor and thought we were gonna get glasses and got handed a terminal diagnosis.Afterward, Pennington said the family feared every milestone could be Bowens last.So we went home thinking this is it. This is our last Christmas, last birthday; we didnt expect spring, and thats heartbreaking, she said.Now, Bowen is one month away from celebrating his fourth birthday and has started preschool, milestones his mother once didnt know he would reach.Pennington says his speech is improving every single day, and he is making friends at school.Doctors are still trying to understand the progression of Bowens cancer, Pennington said.They dont really know why Bowens is acting the way it is, she said. They assume its likely because of his age. In younger kids, it affects them slower for the most part. But again, its hard to tell. Every tumor is different. Theyre kind of astonished.Over the past year, Bowen has undergone testing every two to three weeks and an MRI every 10 weeks. Pennington says he needs to be sedated every two months for those procedures.On Thursday, he is expected to undergo a brain tissue biopsy followed by radiation. His family hopes the biopsy could identify a mutation that would make him eligible for a clinical trial.Our main goal is to find a mutation that matches a clinical trial that can help prolong his life or even shrink his tumor, Pennington said. And just find something to slow this thing down or stop it completely. Kentucky family holds onto hope as 3-year-old battles rare brain cancerThe family is also looking toward potential new treatment options, including a future clinical trial in California involving an aggressive cancer similar to DIPG. They hope Bowen could eventually qualify.We dont know what to expect, Pennington said. So as of right now were just going to go into it with a leap of faith and hope this is the right move and fighting. Thats all we know to do.For Pennington, sharing Bowens story is also about raising awareness and pushing for more attention around the disease.If you dont bring awareness to it, how do we know how to stop it? she said. The more we talk about it, the more thats done about it.Above all, she wants people to remember the child behind the diagnosis.Bowen is a child. Hes a person. He deserves to live, and we just want people to know him, Pennington said. We want him to be a household name just like every other person deserves to be.If you'd like to follow along with Bowen's journey with DIPG on Facebook, you can follow his Bowen Strong DIPG Warrior page.If you'd like to help out the Pennington family as they continue to move through this difficult time, you can donate to their GoFundMe by clicking this link. This story was initially reported by a journalist and has been converted to this platform with the assistance of AI. Our editorial team verifies all reporting on all platforms for fairness and accuracy. ...read more read less