From Patient to Protocol Leader: Jennifer’s Story of Survivorship
Jennifer and her brother.
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We’ve had the privilege of sharing stories of survivorship, spotlighting pediatric cancer patients, like Nick Wilson and Alec Kupelian who are living full lives today because of treatments developed through Children’s Oncology Group (COG) clinical trials. We are especially honored to introduce one of our own: a pediatric cancer survivor and COG staff member, Jennifer Knothe.
ALL PHOTOS COURTESY OF JENNIFER
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Jennifer was just three years old when she and her family learned, on Halloween, that she had cancer. What had always been her mom’s favorite holiday took on a far more frightening meaning when Jennifer was diagnosed with Acute Lymphoblastic Leukemia (ALL).
Jennifer was a quiet, shy child who often hid behind her parents, answering hospital staff with soft squeaks instead of words—a habit that earned her the nickname “Squeak” from her nurses.
Immediately after her diagnosis, Jennifer was enrolled in a clinical trial at City of Hope Hospital in Duarte, California. At that time, the trial was being coordinated by Children’s Cancer Group (CCG), which was one of the groups that merged just over 25 years ago into what is now COG.
Jennifer has few clear memories from that time; only hazy impressions of hospital visitors and glimpses of other children in the playroom. “I think the staff and my parents made sure that [time spent in treatment] was almost a fun experience – like a normal thing,” she said. “I didn’t know any different at that age.”
Jennifer was a quiet, shy child who often hid behind her parents, answering hospital staff with soft squeaks instead of words—a habit that earned her the nickname “Squeak” from her nurses.
Immediately after her diagnosis, Jennifer was enrolled in a clinical trial at City of Hope Hospital in Duarte, California. At that time, the trial was being coordinated by Children’s Cancer Group (CCG), which was one of the groups that merged just over 25 years ago into what is now COG.
Jennifer has few clear memories from that time; only hazy impressions of hospital visitors and glimpses of other children in the playroom. “I think the staff and my parents made sure that [time spent in treatment] was almost a fun experience – like a normal thing,” she said. “I didn’t know any different at that age.”
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Thanks to the researchers at CCG and her care team at City of Hope Hospital, Jennifer’s treatment was successful, and her cancer entered remission about one year after her initial diagnosis. Jennifer has been fortunate to avoid long-term physical or psychological effects from her cancer or treatment, but she understands that this is not the reality for many pediatric cancer survivors. She also recognizes that her outcome was shaped in part by having parents who could advocate for her and had the resources to access care. “Some families are not like that — there might be language barriers or financial barriers,” Jennifer said. |
Jennifer after earning her PhD in Psychology.
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While she still considers herself a shy person, Jennifer left the squeaks behind and found her voice. She went on to study Psychology in college with the goal of becoming a Child Life Specialist and got involved in non-clinical research during her undergraduate education. This awakened Jennifer’s interest in research and inspired her to apply to a research-focused PhD program. Her work focused on social and emotional development in infants and toddlers, and she graduated with a PhD in Psychology. Once that program ended, Jennifer "realized that academia wasn't for me." She began applying to research positions within various fields before turning her attention to the health sector.
She came across an opening at COG with little knowledge of its history or even her personal connection—that COG coordinates the same kind of studies she participated in all those years ago. Jennifer began working for COG as a Protocol Coordinator before being promoted to Senior Protocol Coordinator, the position she holds today.
“Working with experts in the field to facilitate this kind of giant ‘group project’ and make it see the light of day eventually is just a really fulfilling process,” Jennifer said. While protocol development is not without its frustrations and day-to-day struggles, during hard times, Jennifer reminds herself that, “I'm making a meaningful impact for children and families who experience what I went through.”
Outside of her work, Jennifer enjoys spending time with her boyfriend and their “zoo,” as she affectionately refers to their two cats and two dogs. She remains close to her family and can often be found crocheting gifts for family and friends.
She came across an opening at COG with little knowledge of its history or even her personal connection—that COG coordinates the same kind of studies she participated in all those years ago. Jennifer began working for COG as a Protocol Coordinator before being promoted to Senior Protocol Coordinator, the position she holds today.
“Working with experts in the field to facilitate this kind of giant ‘group project’ and make it see the light of day eventually is just a really fulfilling process,” Jennifer said. While protocol development is not without its frustrations and day-to-day struggles, during hard times, Jennifer reminds herself that, “I'm making a meaningful impact for children and families who experience what I went through.”
Outside of her work, Jennifer enjoys spending time with her boyfriend and their “zoo,” as she affectionately refers to their two cats and two dogs. She remains close to her family and can often be found crocheting gifts for family and friends.
"We're doing what we can with the resources we have, but it's getting harder and harder in the funding landscape for children's oncology,"
Jennifer said.
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Jennifer still participates in City of Hope Hospital's survivorship clinic — an experience she’s grateful for. “Most funding is going towards getting these kids to survive, but I think the immediate effects of the stress of treatment — stress of driving to and from a hospital, going to a hospital that's far away from home, and even a family’s home life — are really important too,” she said. To that end, Jennifer would like to see greater investment in research focused on survivorship and quality of life. “These kids deserve a chance to live long, fulfilling lives and not have to experience the side effects that come from this type of treatment and this experience.” |
Jennifer, Senior Protocol Coordinator at COG.
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Luckily, Jennifer’s experience battling pediatric cancer doesn’t hold her back, but “it does affect how I live my life,” she said, “like being very goal oriented and persevering through hard times.” When asked what she hopes readers take away from her story, she emphasized that while COG is doing exceptional work, it remains severely underfunded, especially compared with adult oncology groups.
“We’re doing what we can with the resources we have, but it's getting harder and harder in the funding landscape for children's oncology.” Her perspective underscores both the extraordinary commitment driving pediatric cancer research and the urgent need for greater investment to sustain it.
Your generosity can make more survivor stories like Jennifer’s possible. Visit our website to become a monthly donor and play an important role in sustaining the critical work of pediatric oncology research being advanced by COG members across the globe.
“We’re doing what we can with the resources we have, but it's getting harder and harder in the funding landscape for children's oncology.” Her perspective underscores both the extraordinary commitment driving pediatric cancer research and the urgent need for greater investment to sustain it.
Your generosity can make more survivor stories like Jennifer’s possible. Visit our website to become a monthly donor and play an important role in sustaining the critical work of pediatric oncology research being advanced by COG members across the globe.