Monday, August 24, 2009

Cushing's: A young writer with much to say

Haley Walsh with the medal she won for her science project on Cushing’s disease.
Haley Walsh with the medal she won for her science project on Cushing's

By Beverly Beckham

Globe Columnist / August 23, 2009

 

Haley Walsh wants to be a writer. That’s her dream.

What she doesn’t realize is that she is a writer.

She has already penned a series of children’s books and published a newspaper. She keeps a journal, collects facts, and is always scribbling notes to herself. Plus, she says very writer-like things like, “In 30 years I want to remember every detail.’’ And, “It helps me to write out stuff.’’

Haley was writing even before she got sick. But it was her sickness that inspired her journal.

“My Adventure 12-27-06. Part 1. Starting.’’ That’s how it begins. She was just 8 when she was diagnosed with Cushing’s disease, a tumor on the pituitary gland, rare among adults but rarer still in children.

“The chance of a kid getting Cushing’s disease is one in a million,’’ the now very mature 10-year-old explained last week. She was sitting at her kitchen table in her Norton house, which she shares with her mom and dad, two sisters, three dogs, three frogs, one bird, one guinea pig, and a tadpole.

“The pituitary gland is located inside your head right behind your eyes,’’ she wrote in the “Learn About’’ section of the Ramsey News, a school newspaper she started last year when she was in fourth grade. “The pituitary gland is very tiny, only the size of a small grape! The tumor itself is only the size of a pea!’’

A pea-sized object that does a lot of damage.

Haley’s mother, Stacey, was the first to notice that the shape of her daughter’s face was changing and that she was suddenly putting on weight. It was the summer of 2006, and Haley, she said, “looked like a kid on steroids.’’ Stacey’s sister, a registered nurse, suspected Cushing’s disease. Haley’s pediatrician confirmed it. In March 2007, Haley had brain surgery.

There were months of tests prior to her operation. “This morning I started to cry because I am very tired of coming to Mass General so much! No offense to the very nice people who work at Mass General,’’ Haley wrote in her journal. “The doctors put me to sleep and they went in my leg, the very top of my leg, and went all the way up to my brain and took blood from around my pituitary gland and came down. Then they did the same thing up my other leg,’’ was another entry.

Her mother explained the operation: “The surgeon had to go up through her nose and drill a hole through her sinus wall to get to the pituitary.’’ When it was over and Haley was home and on the mend, this little girl actually wrote him a thank you note. Then she wrote and illustrated a tale about a superhero surgeon, whom she named after her doctor, Brooke Swearingin, and sent that to him, too.

This should be the end of the story. Tumor gone. Child well. And it was for a while.

“Part 13: All Done!’’ Haley wrote in her journal last August. “At the end of July on a Thursday I didn’t have to take any more pills. Yay! . . . I won my 3rd grade science fair on Cushing’s disease! 1st Place! I start soccer tomorrow and I start school on the 3rd.’’

But she was well for only a few months.

“In the fall I started to get suspicious,’’ her mother said. The symptoms were back. Weight gain. A moon-shaped face. Not sleeping through the night. Mood changes. “The pituitary gland controls everything.’’

The second time was harder. They knew what was coming. More tests. More surgery. Haley had her second brain operation on April 14. Last week, they learned that the tumor is still there.

“Cushing’s disease is rare in children. For it to reoccur once is even rarer. But twice?’’ Stacey sighed.

“I felt very scared in the beginning,’’ Haley said. And she may well be scared now, but if she is she’s not telling.

Her Froggy stories are her favorite tales, she said. Froggy is always saving the day. Her latest Froggy book is “Froggy saves the Cat Shelter.’’

“Where do you get your ideas?’’ I asked her, and, like every other writer who is asked this question, she grinned.

“Well, usually they just pop in my head,’’ she said.

She may have more surgery. Or radiation. Her next course of treatment is unclear.

What is crystal clear is that Haley Walsh is a writer with a lot to say.

Beverly Beckham can be reached at bevbeckham@aol.com.

© Copyright 2009 Globe Newspaper Company.

 

From http://www.boston.com/news/local/articles/2009/08/23/beverly_beckham_in_norton_a_young_writer_with_much_to_say/