Small gold pins adorn the lapels of Patt and Mary Helen Hayes, symbols of the battle against cancer their daughter Megan fought ... and lost.
That heart-wrenching experience, however, has led them to find a way to help others waging that war: They're manufacturing Patient Medical Journals, which organize everything from prescription papers to discharge slips.
"We're doing Megan's work our way," said Mary Helen Hayes, whose daughter battled Ewing's sarcoma for two years before succumbing in April 2001. "We thought, 'Gee, this really worked for us -- we should get this to other people.' If you go through something like this, you really want to give back."
In 1999, Megan Hayes was diagnosed with the rare cancer that affects primarily children and young adults.
In the midst of the grief and anxiety the family was feeling, they also had to come to grips with new, unfamiliar medical terms, a slew of doctor appointments, various medications and the painstaking lengths to which they would need to go to reamain organized.
"We got there and they started throwing all this stuff at us and we said, 'Whoa! We need to get organized,' " said Patt Hayes, sales manager for WLEN-FM in Adrian.
That's exactly what they did. They purchased a large binder, several inserts for it for cards and pictures and a three-ringed case to hold miscellaneous items, then put their organizational skills to work.
The result was a "secretary in a book."
At the front is a three-ring paper punch, followed by a case to hold anything from calling cards to spare change. Then began sections for everything else.
The Hayeses placed calendars first, to track schedules and appointments; then jackets to hold business cards. The next section held discharge slips, then doctors appointments and medication printouts. Everything was kept in chronological order, with the most recent on top for easy reference.
"You can always ask for a printout," said Mary Helen Hayes, an administrative assistant for Adrian Public Schools. "The reason we asked is because Megan would have side effects from the drugs, so if she took something, we knew what (to look for)."
Following medication printouts was an information section, which details procedures or anything else someone may need to know when caring for an individual, such as how to disconnect the chemotherapy apparatus.
The next section listed resources.
"You have all kinds of people giving advice -- we would take that information and put it here," Patt Hayes said, gesturing to Megan's medical journal. "Then we could always look back to that."
The next section listed names and phone numbers of family and friends, followed by pictures of people who helped in the fight against cancer.
"It made it more positive with that stuff in there," Patt Hayes said, describing the section devoted to photographs of warm memories, such as when the vocal group Three Men and a Tenor sang a song for Megan at the Lenawee County Fair.
That was the first Patient Medical Journal. It has changed slightly and now there are two versions: one geared to cancer patients and the other a general medical organizer anyone can use. Both have additional sections, such as a medical glossary.
They are even are kept at the Hickman Cancer Center at Bixby Medical Center in Adrian. Doctors there give them to patients whom they believe may benefit from them.
"I think they're a great way to help patients stay well-organized," said Dr. Harry Johnson, an oncologist at Hickman. "With the complexity of cases, it's difficult to keep things straight. (The journals) make it a lot easier for them. They help reduce information overload."
According to the Hayeses, reducing "information overload" is a fitting description of the journals' function.
"Knowledge is power," Mary Helen Hayes said. "Patients have to be an advocate for themselves. (With the journal) you have all the information at your fingertips and it's helpful. We never had a mix-up, it saved time and caregivers loved it."
Patrick Cassidy, director of oncology at Hickman, agreed that the journals are a great way to help patients stay organized.
"I remember saying, 'This would have been good even for when my kids were little,' " Cassidy said. "It's a comprehensive, little notebook for anything the patient may need. It's a place to keep all medical information, and if a patient has to see a different doctor, the patient would be able to explain everything."
Although the Hayeses cannot afford to simply give the journals away, they said they hope to use their "cottage industry" of assembling the journals as a fund-raising tool for cancer research. The price is $40 for either the general medical organizer or the cancer patient's organizer.
"Obviously, this is for profit, but if and when this becomes profitable, we are going to give it back," Patt Hayes said. "We want a cure."
For more information about the Patient Medical Journal or to place an order, visit www.megswork.com or write to Megswork Inc., P.O. Box 1214 Adrian MI 49221.
