Write on: Young author Haley Walsh looks to overcome Cushing’s disease

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Haley Walsh sees life as a mountain. “Some are short, others tall. Some are rocky at the start, some are rocky later on, and others have someone clear a path for them, so they go all the way to the top of the mountain unscratched — not learning from exploring,” she writes in her hand-drawn, homemade motivational book Take a Good Look Around.

Haley Walsh

Haley Walsh

“Some have the rockiest start, and they keep falling, but they continue to try to get past the rocks — getting scratched,” she continues. “They work, fail, retry and do whatever it takes to get to the top — and once they do, all the work pays off, and the other side is a nice smooth way down.”

All this from an 11-year-old girl who just started sixth grade. Haley loves playing soccer, but is an avid writer and illustrator and would like to be an author when she grows up. She already has a significant head start: in addition to her latest motivational book, she’s written several adventure stories, starring Froggy, a humanized frog. She’s kept a detailed journal and she published a school newspaper while in fourth and fifth grade.

“I just like expressing my ideas and being able to share them,” said Haley, who started writing as soon as she could “pick up a pencil.”

Haley lives in Norton with her mother, Stacey (nee Hickey), father, Kevin (both Canton natives), and a younger and older sister. If life is a mountain, Haley’s has had a rocky start — she has Cushing’s disease, a tumor on the pituitary gland — but you would never know it when meeting her. She has an infectious smile and is wise beyond her years.

“Haley, as you get to know her, will surprise you in many, many ways, so I’m not surprised anymore by her; I’m more amazed by her,” said proud mom Stacey. The two sat in their kitchen last Friday afternoon, sharing Haley’s remarkable story.

Cushing’s disease is rare, especially for children. It’s been something Haley has dealt with for four years now, going through two surgeries, multiple medications and radiation treatments. Haley actually best describes what Cushing’s disease is in her self-published children’s book Super Swearingen (named for her neurosurgeon Dr. Brooke Swearingen at Massachusetts General Hospital).

Haley’s main character, aptly named Pituitary Gland, lives in the town of Brainton (the brain) within the country of Bodyan (the body). Pituitary Gland, as Haley explains, plays an instrumental role, controlling the growth of the country (the body). Pituitary Gland is the “size of a grape,” but is “very powerful,” instructing the other residents (glands) of Bodyan (the body) what to do.

Pituitary Gland is attacked by the antagonist, Cushing’s Disease, which takes over Pituitary’s office, making Pituitary fall asleep and disrupting the other Glands in the office. Super Swearingen (the doctor) comes to the rescue, getting rid of Cushing’s and restoring things to their normal state.

“I’ve always loved writing, but I think my experience has improved it a lot,” Haley said.

However, Haley’s journey has not been as cut-and-dried as her book depicts. Stacey said she first started noticing possible symptoms in the summer of 2006 — unusual roundness in Haley’s face and stomach, weight gain, trouble sleeping, and mood changes. Stacey said that her sister, Michelle Powers, a nurse and Canton resident, was the first one to mention the possibility of Cushing’s in December of 2006.

By January of 2007, Haley was officially diagnosed with Cushing’s, and in March of that year had brain surgery at MGH. The surgery was deemed successful, but about 19 months later the symptoms started popping up again. Haley’s cortisol levels (a chemical hormone produced by the body to help manage stress) increased, a telltale sign of Cushing’s.

Haley had her second brain surgery in April of 2009, but Stacey said that by the summer of 2009 she realized the surgery had not worked. Haley then started taking medication to try to keep the symptoms at bay, but that did not work either, so her dosage was increased, but she became ill and went into liver failure.

Luckily, there was no permanent damage and she started taking a different combination of medication. When this proved unsuccessful, she started radiation treatments at MGH this past May. It takes up to 24 months to see if the radiation has worked, so, as Stacey explains it, her daughter’s battle with Cushing’s is in a state of limbo.

All through this “wild adventure,” as Haley puts it, she has remained upbeat. She missed minimal time from school and never uses her bout with Cushing’s as an excuse. “She’s really handled herself with amazing, amazing grace and amazing dignity,” Stacey said. “She makes this process easier on me and her father.”

But even Haley has days where the ordeal becomes overwhelming. “Every once in a while I get really frustrated and I practically break down — I just don’t understand why basically,” Haley explains. “But in my mind, I know there has to be a reason, which I’m hoping is because I’m going to become an author and illustrator.”

Haley’s writing is filled with metaphors and, as evidenced by her Super Swearingen book, she has a knack for explaining things in a creative and easy-to-understand way. She kept a journal during her early stages of Cushing’s, chronicling each trip to MGH. She has a binder full of illustrations — some of animals, some of Disney characters, some of landscapes. Her ultimate goal is to one day write an autobiography.

“At the time, I thought [writing] was her way of coping, and then as she’s gotten older I realized it’s just her way. It’s not necessarily her way of coping, it’s just how she expresses life,” Stacey said.

“It’s just what I enjoy doing,” Haley added.

When asked where she stood on her own mountain, Haley paused and thought about it for a moment. “Right now, I’m not really sure,” she said. “My mountain started off with a bunch of different paths, and [I was] not really sure which one I was supposed to take. Then, after I started understanding what was going on, that’s when the rockiest part happened.

“And then after my first surgery we were thinking that I was all better, that was a pretty smooth [path], and then when I found out that Cushing’s had come back, it was like a huge rock just kind of appeared in front of me,” she continued. “I just kind of found my way around [the rock].”

Right now, Haley feels like she is at a fork in the road. Nevertheless, whatever path she takes, no matter how many twists and turns it takes to reach the summit, Haley seems bound for success.

“As bad as Cushing’s has been and as awful as it has been — because it has been — it’s made her who she is now,” Stacey said.

“There is a reason for everything,” Haley writes in the final page of Take a Good Look Around. “You just have to believe.”

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