From Daisy to Mina —New Book Helps Families Dealing with a Rare Eye Cancer

Daisy Callister was just 16 months old when her parents noticed a peculiar white spot in her right eye. Days later, they sat in a hospital waiting room while surgeons removed Daisy’s eye—full of cancer.

Daisy, now a spirited 9-year-old, lives a happy life with her parents and two siblings as a survivor of retinoblastoma, a rare cancer that usually affects children under the age of 5.

The family’s journey—from the first realization that something was wrong until Daisy became comfortable with her prosthetic eye—was at times heartbreaking and difficult to navigate. Along the way, they found comfort in hearing stories of other young children forced down the same path.

So they decided to pay the experience forward to help other families facing similar circumstances.

The result is a children’s book based on Daisy’s journey titled Mina and Her New Eye.

Written by Lisa Ord, PhD, LSCW, director of the Moran Eye Center’s Patient Support Program, the story follows a young mouse named Mina who encounters a similar diagnosis and outcome to Daisy’s.

Daisy Callister's experience with retinoblastoma inspired“Mina and Her New Eye.”

The Daisy Callister Fund, created by Daisy’s grandparents through the family’s Edward J. Callister Foundation, donated funds for the project, part of a retinoblastoma education and support campaign across the Salt Lake Valley.

Retinoblastoma, a cancer that develops in the eye’s light-sensitive retina, affects about 300 U.S. children annually. With current treatments, the survival rate is greater than 95%. Early detection and intervention—as was the case with Daisy—are essential to prevent the cancer from spreading.

“Having a resource like this book is super important, not only for the child but also for the parents and siblings grieving for the loss their loved one is experiencing,” Ord says.

Ord decided that original plans to focus on patients with actual photos might be a little too real for children and their families.

“Using animals as the characters takes it one step away from the person involved,” Ord says. “It’s not quite as scary; they can view it from a distance, so to speak, but they still understand it is the process they will be experiencing themselves. It helps them know what to expect.”

Holly Nielsen, an award-winning illustrator, brought Mina—and other characters like Dr. Badger, Dr. Bunnywhite, and Mr. Hedge, the prosthetic eye-maker— to life.

In the book, Grandpa Mouse takes a photo and notices a white glow in Mina’s eye and shows it to Mama Mouse, who promptly takes her young daughter to the eye doctor. This is often how cases of retinoblastoma are discovered.

Michelle and John Callister kept noticing something different about their daughter’s right eye and started investigating. Eventually, they determined they were seeing a flash of white in Daisy’s pupil.

They called John’s parents, who advised them to contact the Moran Eye Center immediately.

The following days, weeks, and months were a whirlwind for the Callisters. Somewhere in the blur, they received a book called My Fake Eye. When family members created the fund in honor of brave little Daisy, they wanted to create a new, updated book.

Ord consulted many specialists while writing the book, and Hailey Haffey, PhD, a medical storytelling expert at the University of Utah School of Medicine, provided editing support.

Specialists known as ocularists custom-make prosthetic eyes for each patient to provide a natural appearance. (Courtesy Richard T. Caruso, Eye Prosthetics of Utah)

Sprinkled throughout the pages are questions for young patients to consider. They provide a safe way to discuss difficult issues with children and allow them to express their feelings.

How do you feel about your surgery?

What do you want to do to be happy while you get ready for your new eye?

What do you want to do to be happy when you have your new eye?

“The Callister family was so generous to take their experience and want to help make a difference for others who will be going through the same thing,” says Ord.

ABOUT MORAN’S PATIENT SUPPORT PROGRAM

The nationally recognized Patient Support Program at the Moran Eye Center offers a variety of professionally moderated support groups and vision rehabilitation services to help patients of all ages, families, and caregivers find ways to understand, accept, and move past the limitations of vision loss. For more information, visit moraneye.link/patient-support.

Scan to download a PDF of the book.