"You have to understand," said Paula Crosby, sitting in the couple's home in the Hawthone Ridge subdivision off Ann Arbor-Saline Road in Pittsfield Township. "I was in denial. I didn't want any of this information."

But endless data stared coming at them, anyhow: pages of instructions, medication information, appointments, staff phone numbers, resources, business cards, discharge papers. Soon, Paula had numbers and names on scraps of paper everywhere as she and her husband focused on their son.

"It was chaos," she recalled, as her husband nodded.

Now, a little over a year after John's death, the Crosbys and another couple who also lost a child to cancer are helping to provide other families with specially designed journals to help them navigate the confusing world of cancer treatment.

The journals were designed by Megan Hayes of  Adrian, who died of cancer nearly two years ago.

Megan, then 17, and her parents, Patt and Mary Helen Hayes put the first  journal together shortly after they learned Megan had Ewing's sarcoma. After a trip to Kmart the family had a three-ring binder with sections and pockets that neatly organized and chronicled paperwork, pictures and journal entries during the next two difficult years.

"This book really saved us so much time and stress," said Mary Helen Hayes, holding Megan's blue book." "We did not leave home without this book. Time after time, it just worked."

Megan Hayes was a new student at the University of Michigan when, on Halloween night 2000, doctors told her that her tumor had returned. She died at home the following April, after six memorable weeks at home that were like "a party every day," her father said.

Soon after Megan died, her parents decided one way they could help other families was to market journals similar to Megan's blue book to help patients and their care gives stay organized at an overwhelming time.

It was two weeks before Megan's death that the Crosbys took their son, John, to the doctor for a routine checkup, only to discover the seemingly healthy boy ad andrenocortical carcinoma, a rare cancer usually found in adults.

John, a third-grader at Lawton Elementary, died at home six months later on Oct. 9, 2001.

Eager to do something to help other families, the Crosbys started the John R. Crosby Memorial Foundation to benefit organizations who helped support their son when he was a patient at Mott Children's Hospital. The organizations include the giving Library, Child Life, the Pediatric Intensive Care Unit and the Adrenal Cancer and Comprehensive Cancer Center.

"As Painful as it is, it's very therapeutic for us to help other families." said Walt Crosby, general manager of RN Communications in Ann Arbor.

United in grief and a determination to make a difference for others, the Crosbys and Hayeses became close friends. Now the John Crosby Foundation has purchased 25 of the patient medical journals originally designed by Megan Hayes to give to pediatric cancer patients at U-M. A second version of the journal is designed to assist with any illness or long-term care.

"When you're fighting a potentially fatal disease, you want to make sure you make every moment count," said Paula Crosby. She said she wishes she had owned such a journal.

Walt Crosby said he lived in the ICU with John for 36 days and saw firs-hand how important information can be overlooked. He agrees that an organized notebook would have been a big help for everyone involved in his son's care.

The Hickman Cancer Center in Adrian also purchased 25 of the journals to give to patients. Nurse Darcel Shankle said families appreciate and benefit from the journals.

"They carry them around with them, bring them to all their appointments," she said. "They really help families get organized."

Mary Helen Hayes is glad others can benefit from her family's experience.

"It's what we learned," she said, "and what we can do to make it easier for other people."

To order a Megswork patient medical journal, go to www.megswork.com or email Megswork at info@megswork.com

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