Author Pens New Transplant Patient Guide

Twenty-four hours later, Stewart was stunned by the news: she had acute myelogenous leukemia. "I was thinking it was just a mild case of anemia," says Stewart. "I was totally unprepared for the word 'leukemia.' "

Confusing Choices

In a daze, Stewart listened as her doctor outlined her treatment options. She could undergo several rounds of chemotherapy or she could try a bone marrow transplant, a treatment that was new to Stewart. "Back then, I couldn't even have told you what bone marrow was, or why it was important," laughs Stewart, who now edits Blood & Marrow Transplant Newsletter and has authored several books on the subject. The next 13 months gave her the education of a lifetime.

She opted for the bone marrow transplant, and after several long weeks in the hospital she was discharged in the spring of 1989. Although her hospitalization had been long, recovery came quickly once she returned home.

"I was able to go back to work part-time in June," she recalls, "and by December I was cross-country skiing in the mountains of New Mexico."

Not the Only One

After recovering from her transplant, Stewart met other survivors who had been as frightened and overwhelmed as she had been during her transplant. They all shared one thing in common: none had access to resources, written in lay language, that could help them understand what's involved in going through a transplant. So in 1990, with the help of her oncologist, Stewart began writing Blood & Marrow Transplant Newsletter to help patients understand this daunting medical treatment.

"It was an immediate success," says Stewart. "We started with a tiny mailing list of 700 people and in a few short years, our readership grew to over 10,000."

As new patients were added to the newsletter mailing list, they were sent back issues of the newsletters so that they'd have a complete set of information. After two years, it became clear to Stewart that publishing a handbook for patients that compiled all this information in one place made more sense. Thus was born her first book Bone Marrow Transplants: A Book of Basics for Patients.

The book quickly became popular among patients and health care providers because of its comprehensive treatment of the subject, yet easy-to-read format. Since 1991, more than 80,000 copies of the book have been distributed to patients and their loved ones, and it is frequently referred to as the "bible" by many patients, says Stewart.

Changing Landscape

The 1990s saw many changes in the way transplants were performed. There were new drugs, new sources of stem cells and new theories about transplantation that were not reflected in the Book of Basics. Even more important, says Stewart, were the new tools available to help patients select the appropriate treatment and transplant center, and the emerging data about transplant survivors' long-term quality of life.

"It was clear the Book of Basics needed to be updated," says Stewart, "but with our shoestring budget, we didn't know how we could manage it."

The answer came when Stewart met a board member of the National Marrow Donor Program (NMDP) at a conference in Minneapolis. His son had been transplanted for ALL and he had found the Book of Basics an invaluable guide during his son's treatment.

"He asked how much it would cost to update the book and offered to bring the project to the attention of the new NMDP Executive Director," says Stewart. A few months later, BMT InfoNet and NMDP had forged a partnership to update the Book of Basics. With backing from The Marrow Foundation and Fujisawa Healthcare, Inc., the new book was printed and released in September 2002.

New Book, New Name

The updates to the Book of Basics were so extensive that it required a new name. Bone Marrow and Blood Stem Cell Transplant: A Guide for Patients is a 228-page book designed specifically for patients who will be undergoing a transplant with donor marrow or stem cells, says Stewart. (A similar book for patients being transplanted with their own stem cells called Autologous Stem Cell Transplants: A Handbook for Patients was written and released by Stewart in 2000.)

The new book was illustrated by nationally acclaimed artist Norm Bendell, whose whimsical style makes a difficult text a bit less overwhelming. "There's no getting around it," cautions Stewart, "transplantation is a big, confusing issue. We hope this book will help patients better understand the nuts and bolts of stem cell transplants, and help ease their fears."

On the Horizon: Spanish Translation

Already requests are coming in for a Spanish version of this new patient guide. "We've begun the process of translating the book, with the help of the National Marrow Donor Program, and hope to have a Spanish version of the book ready by the end of next year," says Stewart.

In the meantime, copies of the English version of Bone Marrow and Blood Stem Cell Transplants: A Guide for Patients can be ordered by phoning 888-597-7674, through our web site at www.bmtinfonet.org (click on books and follow the links). "Fifteen years ago, I never would have dreamed I'd be writing books about transplantation today," reflects Stewart, "but it's a challenge and a privilege to work with transplant patients and their families. I never stop learning and am constantly amazed at how resilient people can be in the face of great difficulty."

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