On April 28, 2025, Jessi Buchanan’s mother brought her to the doctor in Kentucky, fearing a common stomach bug. Instead, medical imaging revealed a mass the size of a cantaloupe on the teenager’s right ovary. Within weeks, the eighth-grader was diagnosed with mucinous adenocarcinoma, an ovarian cancer so rare in children that only about 13 cases under the age of 15 have been recorded worldwide.
While the medical challenge was unprecedented, Jessi’s approach to her treatment was revolutionary for her age. Rather than passively accepting care, she insisted on being an active participant in every decision regarding her body. Her story highlights a critical shift in pediatric healthcare: the growing recognition that children are capable of meaningful self-advocacy.
A Diagnosis in the Dark
Jessi’s symptoms—bloating, nausea, diarrhea, and severe discomfort—developed suddenly. Initially, doctors suspected a virus, infection, or pregnancy. However, a CT scan ordered due to her high level of distress revealed the large pelvic mass.
The initial delivery of the news highlighted a common gap in pediatric care. When doctors privately told Jessi’s parents about their cancer concerns, Jessi was not in the room.
“I feel like I should have been present, because it’s my body. I wanted to be part of that conversation,” Jessi said.
This desire for inclusion is not just emotional; it is supported by clinical evidence. Research indicates that when children are involved in medical decision-making, they experience:
* Decreased anxiety
* A greater sense of control and value
* Improved communication between patients, parents, and clinicians
Pediatric experts suggest that children as young as nine can begin making informed treatment decisions. By adolescence, many possess the cognitive capacity to reason through options and express rational preferences. Yet, the default practice often excludes them, assuming they are too young to handle the weight of the news.
Navigating Uncertainty with Agency
Jessi’s case was medically complex. After surgery removed her right ovary, part of her fallopian tube, the tumor, and the omentum (due to a rupture leaking into her abdominal cavity), pathology confirmed the rare cancer. Because standard data for pediatric cases did not exist, tumor boards at Vanderbilt, MD Anderson, and St. Jude’s were consulted. Even among these experts, there was no consensus on whether chemotherapy was the correct path.
Faced with this ambiguity, Jessi took charge. While most teenagers her age are focused on social dynamics, Jessi researched chemotherapy protocols and weighed the risks of treatment against the uncertainty of “watchful waiting.”
Her mother, Stephanie, initially doubted Jessi’s ability to influence the outcome. “It doesn’t matter what I want — no one’s going to listen to me, because I’m a kid,” Jessi recalled thinking. Her parents and nanny helped reframe this mindset, reminding her: “This is your body. Your opinion matters.”
When Jessi met with her oncologist at Vanderbilt, she came prepared. Her reasoning was clear: undergoing chemotherapy represented active action rather than passive waiting. Impressed by her knowledge and maturity, the oncologist agreed to proceed with her choice. From that point on, Jessi refused to be an observer. She actively participated in selecting her care team, even postponing a procedure because she was uncomfortable with the available surgeon. She also requested therapy to develop coping mechanisms for emotions she couldn’t discuss with her parents.
The Ripple Effect on Family Dynamics
Jessi’s advocacy forced her family to adapt as well. Her father, Darrell, admitted that his initial reaction was overprotectiveness, restricting her social life out of fear. However, he realized this isolation was harming her mental health.
“Once I realized that was starting to bother her, I backed off. And once we let her start doing those things again, her whole attitude changed. She felt somewhat normal.”
This shift underscores a vital lesson for families facing pediatric illness: agency fosters resilience. Allowing children to maintain normalcy and make choices can significantly improve their psychological outlook during treatment.
The Challenges of Visibility and Access
Now a high school freshman, Jessi is in remission, monitored with the hope that the cancer will not return. She dreams of becoming a pediatric oncology nurse, turning her experience into a career helping others. However, her journey is not without ongoing struggles.
She faces social stigma, with some peers accusing her of faking her illness because her recovery seemed rapid. She responds with patience, understanding that many do not comprehend the nuances of rare diseases. Furthermore, her family faces significant financial strain. Living on a fixed income, they are burdened by the costs of treatment and travel to specialized hospitals—a reality for many families dealing with rare pediatric conditions.
Conclusion
Jessi Buchanan’s story is a testament to the power of including children in their own healthcare. Her experience demonstrates that self-advocacy does not burden young patients; it empowers them. By giving children a voice, parents and clinicians can help them cope with trauma, maintain their sense of self, and navigate the complex medical system with dignity. As Jessi’s mother advises: “Include your child. Give them a voice.”
