Graphic novel series puts patient stories at the forefront
“I did think they did a beautiful job at putting it into language."
A new graphic novel series looks at Mayo Clinic patients’ experiences with illness and challenges -- and their “lives beyond.”
The first two entries, “My Life Beyond Bullying: A Mayo Clinic patient story” and “My Life Beyond Leukemia: A Mayo Clinic patient story” both hit shelves Oct. 12. Stories about autism, immunizations and more are planned for 2022. The books are available at Barnes and Noble and through Mayo Clinic Press at mcpress.mayoclinic.org.
“My Life Beyond Leukemia,” written by French/American illustrator Guillaume “Hey Gee” Federighi and now-10-year-old patient Rae Burremo, follows leukemia patient Amy through a magical adventure to help other kids face blood cancer and treatment.
Federighi said he was attracted to the goal of helping patients put taxing events into words.
“They are amazing kids and they've been through a lot already, and I find them very mature for their young age,” he said. “They have a lot of ideas and are very creative and it's a joy to work with these children. … They have a lot to say about their experiences.”
Through a series of Zoom calls, Federighi met with the patient-authors and got a sense of their personalities, experiences and what they wanted to address about their illnesses or difficulties.
Each story was personalized to the storyteller, Federighi said -- a “reflection of the patient.”
The goal, he said, is to help readers learn about illnesses from a child’s perspective.
“These are art books, but they’re more than that,” he said. “They’re a platform between children, parents, and doctors, to have a conversation.”
Dr. Mira A. Kohorst, a pediatric hematologist/oncologist at Mayo, fact-checked “My Life Beyond Leukemia.”
“I did think they did a beautiful job at putting it into language,” Kohorst said. “You know, the voices and experiences of children with leukemia are rarely heard. … Because we mostly talk with the parents -- parents are the ones making all the decisions about the treatment because the patients are minors. We talk with the kids too, but we don't usually get the whole story in perspective from their eyes -- and at their level.”
The book emphasizes points of treatment Kohorst didn’t expect -- the procedures that children undergo and some of the visual effects of cancer treatment.
Usually, she said, doctors explain leukemia in detail to parents who make medical decisions, and let the caretakers decide how they want to present the treatment details to children. Preteens get an understandable, but complete picture of what’s going on.
“My Life Beyond Leukemia” is a resource for patients who don’t have any sort of related experience, Kohorst said, as well as siblings struggling to understand what's happening to their brother or sister.
Beside that, they’re just good stories. Kohorst read the books to her own children, and said she has another friend whose kids “want to read it every night, because it's a very captivating way to present (leukemia).”