It all began with an innocent conversation about a neighbor who had shaved their head amidst a cancer battle.

“Mommy, I want to shave my head,” came from the sweet and kind Adalynn Mae Jessen. A few days later she mentioned to both her parents, Kate and Zach, that she was going to die. Hearing this from their healthy 3-year-old was alarming. In hindsight, this conversation would shed light on the immense power and understanding this little girl had about her own mission during this lifetime.

A few weeks later, while watching “Frozen,” Adalynn mentioned seeing two Elsas. Kate was concerned by this statement but didn’t think it was too extreme. However, the next day at the park, Adalynn struggled to walk and had difficulty judging her steps. It was then that Kate, with training in neurological ophthalmology, knew these could be signs of something worse, and immediately called their pediatrician.

The initial diagnosis was a common ear infection, but Kate politely disagreed and noted her own concerns. Relying on her training and instincts, she sought a second opinion. This doctor, along with her nurse, promptly caught on to additional signs and promptly referred them to Riley Hospital or Children for further evaluation.

Every parent’s worst fear played out that day at Riley, as Adalynn was shuttled from one exam room to another. Despite it all, Adalynn continued to display an extraordinary understanding of the world and her role within it. Doctors and nurses remarked at her composure and abilities, as she articulated and complied with their requests with understanding and her infectious smile.


On July 22, 2020, the doctor sat down with Adalynn, Kate and Zach, and delivered life-changing words: “Adalynn has six months to live.” He further explained that Adalynn had a very rare brain cancer called diffuse intrinsic pontine glioma (DIPG). It’s a fast-growing and aggressive tumor in the brainstem’s pons area, responsible for vital functions like breathing, heart rate, balance and bladder control. The condition was 100% fatal, the doctor explained, and the family was advised to make the best of the time they had left.

Shocked and bewildered, the family returned home unsure of how to explain this to Adalynn. Realizing time was precious, Kate reached out to Cincinnati Children’s Hospital, known for its expertise in childhood cancer. Upon initial discussions, Adalynn was a match for a treatment trial, and as a result they packed their bags and headed to Cincinnati.

Upon arrival they met with Adalynn’s medical team, and learned of the treatment’s potential benefits and expected side effects. Though daunting, Kate and Zach assured Adalynn they would go home if any of it was not something she wanted to do. However, Adalynn insisted she do the trials.

Adalynn’s first treatment, the Skittles study, involved practicing swallowing pills. This preparation was crucial as she would end up taking 70 to 80 pills weekly, along with her additional therapies, in an attempt to stabilize the cancer. One trial alone consisted of 30 rounds of sedated radiation in addition to her daily oral regimen.

Despite the challenges, Adalynn’s positivity and strength was unwavering. Supported by her parents, she faced each hurdle with a smile, determined to fight not just for herself, but also for others battling sickness and disease. Her resilience and infectious positivity inspired all around her.

Adalynn’s prognosis hadn’t changed significantly, but she was stable and given the all-clear to return home to Franklin. However, they would soon return to Cincinnati when Adalynn developed hydrocephalus, a neurological disorder caused by an abnormal buildup of cerebrospinal fluid within the brain. She underwent emergency surgery to place a shunt and stabilize her on December 31, 2020. Shortly after this, Adalynn would be diagnosed with a secondary cancer, leptomeningeal disease, on January 7, 2021, which had spread throughout her brain and spine. Despite being given only two weeks to live, Adalynn once again defied the odds.

addieAdalynn immediately began another round of sedated radiation, infusions, and compassionate chemotherapy treatments. She continued these therapies in addition to her daily oral regime until May 13, 2021, when she peacefully passed away surrounded by her loving parents.

Adalynn’s bedroom remains untouched, serving as a sacred space brimming with memories of her courage, resilience, personality and spirit. Her room is adorned with a poignant memento from Cincinnati Children’s Hospital – a collection of stringed beads representing Adalynn’s journey, symbolizing her bravery. Though Adalynn is physically gone, her spirit lives on.

Kate and Zach still feel connected to Adalynn and report that her presence is still strongly felt at the family farm. Her dolls will appear in the living room, lights will flicker on and off, and little objects she liked will move throughout the house. Their home, once vibrant with Adalynn’s energy, now resonates with the laughter of her younger twin siblings, Wrenlee and Waylon, as they play around the gravel driveway, interact with the feral cats Adalynn adopted, and tend to chickens, goats, emus and horses.

addieAdalynn’s legacy extends beyond the family farm; her parents bravely chose to donate her brain to science, contributing to ongoing research on DIPG cancer. Parts of her brain remain at Cincinnati Children’s Hospital, aiding researchers in trials and tests related to her own therapies, which pave the way for crucial advancements in understanding the disease. DIPG remains uniformly fatal. Fortunately, new advancements in technology have been made possible by the courageous contributions of families like the Jessens. New reports show that newly diagnosed patients have a post-diagnosis of up to five years, as opposed to the initial estimate of six months.

Kate maintains an active role on The Cure Starts Now advisory board, funding research and grants for institutions studying DIPG and childhood cancers. Approaching the third anniversary of Adalynn’s passing in May, her legacy lives on, with the Adalynn Strong chapter raising over $170,000 to support research and resources for DIPG-affected families.

Comments 1

  1. C. Mann says:

    It is an amazing, heartfelt, and touching article. It allows for hope and shows courage when oftentimes life does not.

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