MINA AND HER NEW EYE Illustrated by Holly Nielsen Written by Lisa Ord, PhD Edited by Hailey Haffey, PhD
Edited by Hailey Haffey, PhD
Illustrated by Holly Nielsen
2022 MORAN EYE CENTER
Dr. Hailey Haffey is an award-winning writer and researcher who works to improve healthcare outcomes through storytelling. Dr. Haffey is especially happy that she can share her work on Mina’s story with her daughter, Gracie, and niece, Tinsley.COPYRIGHT
Dr. Lisa Ord is an associate clinical professor in the University of Utah’s Department of Ophthalmology and Visual Sciences and has directed the John A. Moran Eye Center’s ophthalmologybased Patient Support Program since 2012. This vital program helps people of all ages with eye problems live happy lives. Dr. Ord has published several peer-reviewed journal articles in the field of vision loss for older people. This is her first story for children.
Written by Lisa Ord, PhD, LSCW
DEDICATIONretinoblastoma.
Mina and Her New Eye is dedicated to Daisy Callister, diagnosed with retinoblastoma when she was 16 months old. J ohn and Michelle Callister sought treatment for their daughter after Michelle noticed an abnormality in Daisy’s right eye. Michelle took a photograph that captured an image of a white spot on Daisy’s pupil and showed Daisy had no red reflex in her eye. Physicians diagnosed Daisy with retinoblastoma, and a John A. Moran Eye Center surgeon removed her eye to prevent the cancer from spreading. Today, Daisy is a healthy, happy child who enjoys creating art and spending time with her family. The Moran Eye Center at the University of Utah published Mina and Her New Eye thanks to The Daisy Callister Fund, established by Daisy’s grandfather through his Edward J. Callister Foundation. The fund supports families experiencing
MINA AND HER NEW EYE
Holly Parson Nielsen is an award-winning illustrator and recipient of the Moon Beam Gold Medal Award. Just like Mina, she spent much of her childhood drawing pictures. Though she is an adult now, she never grew very tall. Holly still can’t reach the footrest on her eye doctor’s examining chairs. You can visit her website at artbyholly.com.
One day Grandpa Mouse took a family picture. Mina looked different from the other little mice. One of her eyes had a strange glow. “I wonder what makes Mina’s eye glow like that,” Grandpa asked himself. He thought, “I better tell her mom!”
Mina was a happy, kind little mouse.
Mama Mouse took Mina to an eye doctor for a checkup right away.
Dr. Badger smiled and said he did have a more comfortable test.
“Dr. Badger,” Mina asked, “Do you have an easier test for my eye?”
Dr. Badger shined a bright light in Mina’s eye. He needed to see all the way to the back of her eye. The light was so bright that it made Mina wiggle.
Doctors often work with a whole team to help their patients! Did you know?
Dr. Badger’s team used medicine to make Mina sleep so he could get a good look behind her eye.
It turns out that the best way to see to the back of a little mouse’s eye is while she is asleep.
Anesthesia is a medicine that helps you take a nice nap.
An anesthesiologist is a doctor who gives those sleepy medications. When we get tests with medicine that makes us sleepy, it is called an exam under anesthesia.
The bump is making her eye very sick. But we can help her.”
Doctors also call bumps “tumors.”
When the test was over, Dr. Badger told Mina’s parents about what he found.
Dr. Badger said, “I saw a little bump in Mina’s eye.
Dr. Badger said he fixes some tumors with lights. He fixes other tumors with medicine. And still other tumors will need surgery.
Doctors can do surgery when parts of the body need extra help to get better. Dr. Badger thought Mina’s tumor might need surgery.
Luckily, he knew just who to call— his friend, Dr. Bunnywhite.
“You are going to need surgery, Mina,” said Dr. Bunnywhite. “How do you feel about this surgery, “IMina?”’malittle nervous,” said Mina. “Don’t worry! We will take good care of you,” said Dr. Bunnywhite. What about you? How do you feel about your surgery?
Dr. Bunnywhite also looks deep into Mina’s sick eye. She tells Mina that sometimes the sick eyeball needs to be removed so little mice can get better.
When Dr. Bunnywhite does Mina’s surgery, the anesthesiologist gives her medicine for surgery again, just like in her exam with Dr. Badger.
Mina feels safe because she knows she has a great team helping her.
While Mina is sound asleep, Dr. Bunnywhite replaces Mina’s sick eyeball with a ball the same size as her normal eyeball. This little ball is called an “implant.”
The doctors place a safe covering under Mina’s eyelid. They also place a patch over her eye. Mina only has to wear the patch for a little while.
After six weeks, Mina’s doctors remove the eye cover for Mina to get ready for her new eye.
“Hi Mina! I’m an ocularist. That means I make handmade eyes called prosthetic eyes. I’m glad I get to help you!” Mina smiles and shakes his hand.
Mina’s parents take her to visit Mr. Hedge.
It’s time for Mina to get her new eye!
Right away, Mr. Hedge takes pictures of Mina’s real eye. “Mina,” he said, “I’m going to use these pictures to paint your prosthetic eye to match your real eye.”
Mr. Hedge works to make sure Mina’s new eye will be just right!
Sometimes, it takes a couple of visits to Mr. Hedge to get it just the way the patient would like.
When Mina’s new eye is finished, Mina and her parents go back to see Mr. Hedge. He tells them how to put her new eye in and how to take care of it.
Mina will go back to see Mr. Hedge in about six months to make sure her new eye still fits well. After that, she will go back to see Mr. Hedge every year as she grows bigger to make adjustments so that Mina’s eye will fit perfectly as she grows up.
Mina is a happy little mouse. Her favorite games are mouse-ball, hip-hop-play-scotch, and drawing beautiful pictures for her family and friends! What about you? 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?
Genetic (hereditary) form of retinoblastoma: Ten percent of children who get retinoblastoma have a family history; 90% develop the disease without any family history. Forty percent of children with retinoblastoma have a genetic or hereditary form of the disease, even if no one in their family has the disease. These children are at risk of developing retinoblastoma in both eyes. Their doctors will closely watch both eyes during the treatment course. Those with hereditary retinoblastoma have a 45% risk of passing it to their offspring.
Leukocoria: An abnormal white reflection in the pupil, also known as white pupillary reflex, which can often be seen in photographs. A normal retinal reflex has a redorange glow. Many serious eye diseases, including retinoblastoma, can cause leukocoria, so an ophthalmologist must evaluate this finding.
Retinoblastoma is a cancer that arises from the retina, a light-sensitive layer of cells in the back of the eye that sends nerve impulses along the optic nerve to the brain, which forms a visual image. The cancer usually affects children younger than 5 years of age; the average age of diagnosis is 12 to 18 months.
• Secondary enucleation: Enucleation after alternative treatments have failed.
Oculoplastic surgeon: A surgeon specializing in diseases of the orbit (bones of the eye socket), lacrimal gland (responsible for tears), and eyelids. These surgeons often perform reconstructive and cosmetic procedures around the eyes.
Cryotherapy: A freezing treatment that uses a metal probe to freeze cancer cells from the outside of the eye to the inside directly over the tumor on the retina. It is generally used for smaller tumors toward the peripheral edge of the retina or if laser treatment is not effective.
Enucleation: The surgical removal of the entire eye. During the procedure, a surgeon removes the eye and places an implant in the eye socket. Extraocular muscles are attached to the implant, and the prosthesis is usually fitted 6-10 weeks after surgery. Medical experts recommend enucleation for large or advanced tumors.
Below are some important terms related to retinoblastoma and its treatment.
Malignant: When abnormal cells divide without control, and in particular, invade adjacent tissues and other parts of the body.
Intra-arterial chemotherapy: Chemotherapy delivered directly to the artery supplying blood to the eye. The procedure is performed under general anesthesia. The surgeon punctures the artery around the hip and inserts a catheter into the artery supplying the eye to deliver the chemotherapy medicine slowly. The procedure requires repeated cycles. Intravitreal chemotherapy: Chemotherapeutic medications delivered directly into the gel (vitreous) in the back of the eye under general anesthesia. This treatment reaches tumor cells or satellite tumors that are in the vitreous and cannot be treated well with other forms of chemotherapy. A small dose of chemotherapy is injected with a tiny needle. On withdrawing the needle, cryotherapy is used to prevent any cells from spreading.
Laser photocoagulation: A laser treatment that uses heat to destroy cancer cells. The laser beam is aimed through the dilated pupil to the retina. Laser treatment may be used alone for smaller tumors or combined with chemotherapy for larger tumors. There is usually minimal discomfort for the patient after laser treatment.
Exam under anesthesia: An exam performed while a child is asleep under general anesthesia to conduct specialized testing, including photographs and ultrasound imaging of the eyes.
About Retinoblastoma and Treatments
Ocular Implant: An implant placed into the eye socket after an eyeball is surgically removed. The most commonly used implants have many tiny pores, which allow blood vessels to integrate with the implant. Some implants also have holes that allow extraocular muscles to be sutured to the implant. Other times, the surgeon might suture the muscles to the sclera (the white outer coating of the eye) that encases the implant. The integration of extraocular muscles allows for some movement that corresponds with movements of the other eye.
Ocular Prosthesis: Also known as an artificial eye, an ocular prosthesis is placed over an implant and fits under the eyelids. It is custom-made for each patient to provide a natural appearance. Ocularist: A specialist trained in the fabrication and fitting of ocular prostheses.
• Primary enucleation: The first and only treatment to prevent the further spread of the tumor.
Plaque brachytherapy: A radiation treatment in which radioactive, rice-sized pellets, or “seeds,” are placed very close to the tumor for a short period. This kind of radiation treatment provides a large dose of radiation to the tumor, minimizing the radiation exposure to the rest of the body. Surgery is performed under general anesthesia to suture a small, gold disc holding radioactive seeds to the eye. The disc, or plaque, is removed after 3-5 days via a second surgery.
Extraocular muscles: Muscles attached to the outside of the eyeball that control eye movement.
Approximately 300 children in the United States develop retinoblastoma each year. With current treatments, the survival rate is greater than 95%. Early detection and intervention are essential to prevent the cancer from spreading.
Treatments: Options may include cryotherapy, enucleation, intraarterial or intravitreal chemotherapy, laser photocoagulation, or plaque brachytherapy.
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