ADRIAN - The memory of Megan Hayes can be found in the people she knew and the places she went.
At Notre Dame Academy in Toledo where Megan was a student, a memorial garden will be created in her honor. In Adrian, her hometown, charity concerts have been held to raise money for cancer research.
And in the backyard of the home where she grew, flowers and shrubs are planted in her name.
But Megan's parents don't want her memory to end simply with those who knew her. They are striving to keep her fighting spirit alive with medical journals - something Patt and Mary Helen Hayes found essential while caring for their ailing daughter.
Megan was diagnosed with Ewing's Sarcoma, a rare childhood cancer, in April, 1999. She died April 25, 2001, at age 19.
“About two weeks after Megan died, we were sitting here in the living room and we talked about what had happened,” said Mrs. Hayes, an administrative assistant at Adrian Public Schools. “We believe it is our purpose to create journals for others in similar situations.”
The creation of Megan's “blue book” began less than a week after her diagnosis. She was admitted to the University of Michigan Medical Center in Ann Arbor to begin aggressive treatment of the massive tumor that had formed in her ribcage. It was then that she and her parents realized just how complicated her illness was.
Nurses were scheduling appointments for treatments and tests. Doctors were prescribing medication. And emergency trips to the local hospital meant new doctors who didn't know her medical history.
Megan's blue book had everything she and her doctors would ever need. A calendar for appointments and medications, files to organize her discharge papers and test results, and a journal to document the course of her illness. There were spots to file business cards and photographs, sections for resource materials and her medical cards, and a place to keep instructions for things like how to administer drugs.
Megan never went anywhere without the book. It was the key to her journey through her illness.
“In order to not have mistakes and not miss anything, we put everything down,” Mrs. Hayes said. “It relieves the stress. You don't have to remember anything; it's all right here.”
The Hayeses have no doubt that the journal offered them some sanity during a devastating time in their lives. They are certain that it eliminated confusion and mistakes as well as saved precious time.
Most important, the blue book offered Megan and her family peace of mind, secure in the knowledge that she would never be lost in the system. “We had to be our own advocates,” said Mr. Hayes, a sales manager at a local radio station. “We realized that we needed to know more. We needed to know what questions to ask.”
When their daughter died, the couple took what they learned when creating the blue book and offered it to others.
The first journal the couple created was the result of many hours of research and plenty of input from the doctors they had gotten to know so well. Together, they created the cancer Medical Journal, and made it available to others under the trademark name, Megswork. A second, general Medical Journal also was created.
“We do believe that we are really doing Megan's work,” Mrs. Hayes said. “She wanted to be a physician and so she went to the University of Michigan. But after about nine weeks, she relapsed.”
Jenny Engle is currently cancer-free. The 34-year-old mother of four was diagnosed with breast cancer more than a year ago and found herself in a whirlwind of doctor's prescriptions and hospital visits.
Mrs. Engle said she met the Hayes family at church. It was there she learned of their medical journals.
And after her second visit to the Hickman Medical Center, she asked the facility - who had purchased some of the journals - for one.
“It's been wonderful. I guess I would say that I'm sure it's doing what they wanted it to do. It's just so organized,” said Mrs. Engle. “Now I'm into a routine and I know so much more about my illness. But at first it was just this overwhelming amount of information.”
The couple have sold about 400 journals to date, the majority to service organizations who then disseminate them to patients. With the $40 fee, Mr. and Mrs. Hayes produce more journals.
Mrs. Hayes said they would love to produce the journals for free, but cannot afford to do so. They have pledged that once they can sustain the company, a foundation will be set up in Megan's name and all profits will be donated to cancer research.
Dr. Jennifer Hirsch, of the University of Michigan Medical Center, helped care for Megan during her illness. Now a cardiac surgery fellow, Dr. Hirsch said she often sees patients who are overwhelmed with the paperwork that comes with having a major illness.
The journals, she added, would benefit most patients and she would like to see them made more readily available.
“I certainly see more often patients who have very little grasp about their medical history rather than those who have something so comprehensive as what the Hayeses had with that blue book,” Dr. Hirsch said. “I think the journal is a fabulous idea that really helps to put control back into the hands of the patient who often feels powerless about their illness.”
For more information, go to www.megswork.com.