Medical jargon shouldn’t make a sick child feel worse, say women behind new book project

A Utah educator, two of her sisters and a family friend form Hello Brave, to improve health literacy among kids.

(Anna Mischke) Illustrations by Anna Mischke of the four women who comprise the Hello Brave team, clockwise from top left: Anna Mischke, illustrator; Brooke Healy, teacher; Nina Gonzalez, a doctor; and Reina Beach, patients' advocate and mother of a childhood lymphoma survivor.

When Reina Beach’s son, Elliott, then 8, was diagnosed with a rare form of cancer, she said that what happened after that felt like a blur.

“It all was very quick and overwhelming,” Beach said. “It just was like — boom — all at once.”

Doctors found Burkitt lymphoma, a type of cancer that primarily affects children and young adults, in Elliott’s tonsil. He was given a scan that night, and scheduled for surgery. A week later, he started chemotherapy.

Then, they conducted a biopsy of Elliott’s bone marrow, and gave him a dose of intrathecal chemo, which is administered through the tissue that covers the brain and spinal cord, with a needle to the spine.

During that first round of chemo, doctors would come in and discuss the side effects. Elliott — “a very anxious and sensitive kid by nature,” Reina Beach said — stayed silent. She said she asked Elliott if he would rather the doctors talked to her in the hall, but he insisted on hearing what they were saying.

“Then they left the room and he just started sobbing,” she said.

The experience prompted Beach, who lives in Nashville, to team up with three women — her sisters, Nina Gonzalez, a doctor in San Diego, and Brooke Healy, an educator in Salt Lake City, and their family friend, Anna Mischke, an illustrator in St. Louis — to brainstorm about ways to help kids like Elliott.

“As we were brainstorming, it was like, ‘If somebody handed me a children’s book about lymphoma, right after Elliott was diagnosed, I really think it would have helped so much and it would have helped the trauma that came after that we’re still dealing with,’” Beach said.

That’s how the project Hello Brave was born, with a goal of helping improve health literacy for children and their families going through medical situations. The first book in the planned series, “A Brave Kid’s Guide to Lymphoma,” was released in May.

The women-led initiative is aiming to get 500 copies of the book donated to children’s hospitals, starting in Salt Lake City, with a long-term goal, Healy wrote, “to create a comprehensive library covering a wide range of diagnosis and treatments.”

Beach said the four women realized that what was “lacking is resources for kids going through medical experiences. Because medical experiences are scary, especially when you’re a kid.”

‘The emotional side’

Beach makes it clear that she doesn’t blame the doctors or hospital staff for how Elliott’s case was handled.

“It was so much information in a not kid-friendly way at all,” she said. “They were talking to me, but … it was way too much for him to hear. [It] was really hard to recover from that experience.”

The hospital, Beach said, did have some resources, such as a psychologist and child life specialist. However, she said, those people were “very busy” and “we didn’t see them very often, so we really were navigating the majority of it on our own.”

The hardest part of the whole experience, Beach said, was “the emotional side of it.”

“How do I talk and get through to him? How do I know how much information to give? All these things weighed really heavily on me,” she said. “I didn’t have any tools of how to talk to him about it, and it was just so challenging.”

One person that was able to help Elliott, Beach said, was his aunt, Nina Gonzalez — who has a background in preventive medicine and public health.

“I would call her more than once a day, and she would be on speakerphone with me when we had doctor’s appointments,” Beach said. “She really translated everything … she was able to give it to us in digestible pieces and sometimes I’d even have her talk to Elliott directly.”

Elliott has been cancer-free since February 2022, Beach said, but transitioning back to his life as a second grader has been difficult.

“He struggled a lot mentally, and [in] getting back to school and all the friendships changing,” she said. “They’re in second grade, and they didn’t know how to deal with it. He comes back and he’s like, ‘Shouldn’t I be the most special person ever?’ And they’re like, ‘No, you’re just a kid.’”

(Hello Brave) The first two titles in a planned series, by the health literacy project Hello Brave, "A Brave Kid's Guide to Lymphoma" and "A Brave Kid's Guide to Leukemia."

What’s in the books?

In “A Brave Kid’s Guide to Lymphoma,” the main character, 7-year-old Charlie, has a strange lump in his neck and starts to feel tired all the time.

With bright illustrations and comforting language, the book follows Charlie’s diagnosis journey.

Sometimes, though, Charlie still doesn’t understand what the doctor is saying. The doctor introduces Charlie to Cobi, a “Brave Buddy” — a blue cloud-like shape wearing glasses — who answers Charlie’s questions about his condition and other topics.

Gonzalez writes the text, and Beach adds in her experience as a parent and, now, a patient advocate.

“When you think about communicating broadly to the public on health topics,” Gonzalez said, “best practice is really trying to write things at around a fourth-grade reading level. That’s where you get the most comprehension just across the population.”

Health communication, Gonzalez said, has always been a part of her career in public health, especially when it comes to “simplifying concepts and making them more broadly approachable.”

It’s also been fun, Gonzalez said, combining her creative process with Mischke’s illustrations.

Mischke said she feels “like I’m going to continue to expand my medical knowledge a lot more as we continue. … I found that I really, really enjoy medical illustration, and especially in this, in the sense of bringing it into a place where kids can understand it, really trying to translate it into something that’s whimsical and playful, and still educational.”

At the end of the book, there is a glossary of medical terms used in the story, a list of questions to ask a care team, and tips for adults on how to talk to a child about their diagnosis. There’s also a “certificate of bravery” for the kids.

The book is dedicated to Elliott, “whose extraordinary bravery inspires and motivates many.” Elliott, now 10, was involved in the project, his mom said, giving suggestions.

“He’s like, ‘Oh, Mom, that’s cringe,’” Beach said. “It also was really neat, because when I read him the whole draft, he said, ‘Now I know what lymphoma is.’ He didn’t know.”

Beach said that even though they thought they had explained it to him, it was obvious it wasn’t in the right way to connect with him.

“It’s really powerful if you can get a kid to understand what they’re going through, because a big part of his anxiety was the unknown,” Beach said.

The first book, Gonzalez said, is just their “starting point.”

“We wanted to kind of test out the concept,” Gonzalez said. “Like, can we actually break down these really complex medical topics and make them approachable for kids? And can we do this through children’s books, given the expertise that we have in the room?”

Beach, in an email this week, said the second book in the series, about leukemia, has been published; the group is waiting for approval from Amazon to start selling it on the site. The group also is planning to donate printed copies of both the lymphoma and leukemia books to hospitals, she said.

After that, according to the group’s website, the women plan to write about blood draws, chemotherapy, and staying overnight in a hospital. The women also have other ideas, such as distraction card decks for kids to use, and stuffed animal versions of the Brave Buddies.

“Medical experiences are scary and hard,” Gonzalez said, “and we’re trying to make them a little less scary, a little less hard. … The more they understand, the more they know — ‘What is this thing?’, ‘Why do I have to have it?’, ‘What exactly is going to happen?’ — kind of brings them that information [and] comfort [to] decrease the anxiety. … We see a path forward where we can really improve experiences for a lot of kids.”

Getting the books to kids

Healy, the Salt Lake City-based educator, said the goal of Hello Brave is to start sharing the books in the four women’s local communities.

“Our initial push is going to be just to distribute and get this resource into the hands of the people who need it,” she said.

The plan is to give some books directly to hospitals, and sell books directly to people.

In early May, the group ran a Kickstarter campaign, and made its $10,000 goal — which, Healy said, would pay to produce the books and allow the group to donate them to hospitals. “A Brave Kid’s Guide to Lymphoma” is also available for sale on Amazon.

Gonzalez points people who want to know more about Hello Brave to follow its Instagram account or website, to see when a book or product has been released, or to find other resources the group shares.

Gonzalez said she thinks the “potential to improve medical experiences and outcomes” from this project is huge and exciting. As both a mother and a health care provider, she said, she has felt “overwhelmed” at times when her kids are sick.

“The best medical experiences are collaborative ones, when the patient can feel empowered to really engage in shared decision-making with their whole care team. In this case, in childhood illnesses, it’s the patient and their caregiver or their parent.”

“We’re all moms here, or soon-to-be moms,” Healy said. “This is something that grows from a personal need that we’ve all experienced in different ways. We see other moms and caretakers. … We know that it’s kind of a universal experience.”

Beach said, “If I had a resource where I could have read through this book with [Elliott], he wouldn’t have needed to be there for that doctor conversation. I could have been able to give him what he needed.”

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