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Childhood Leukemia Book Offers Practical Help for Parents and New Career for Author By Brenda Eatman Aghahowa “I always give choices such as, ‘Do you want the white pill or the six yellow pills first?’ It gives them a little control in their chaotic world.” (from page 61 of Childhood Leukemia) This is one of many tips suggested by parents in Nancy L. Keene’s book, Childhood Leukemia: A Guide for Families, Friends & Caregivers. Authored by a mother whose now healthy 10-year-old daughter weathered treatment for the disease, the book is chock full of practical information and advice on everything from handling the diagnosis to hospitalizations to insurance to emotional coping and bereavement. For parents living through the trauma of pediatric oncology, there’s help and support in the pages of Keene’s book from the 54 parents, pediatric survivors and siblings she interviewed. Message: you’re not alone. Making Lemonade out of Life’s Lemons Keene’s daughter Kathryn, three years old at diagnosis, survived all that goes with acute lymphocytic leukemia (ALL). There were the red dots under the skin, the paleness, chronic fatigue, multiple transfusions, weight loss, hospitalization after hospitalization, and more. Even though she was a full-time homemaker at the time, Keene says what most parents who’ve been in her shoes say about coping with the disease. “It’s incredibly difficult. It totally disrupts your life.”
But following the two years and three months of treatment, her daughter fully recovered and Keene now leads a happier life, shuttling Kathryn and her eight-year-old sister Alison to cello and piano lessons, and to other activities. Keene’s brother Bill, a resident of Charlottesville, N.C., suggested she write a book about her experiences to help others. But Keene, who didn’t even own a computer at the time, says she had no desire to relive the nightmare and brushed aside his idea. Undaunted by her reluctance, Bill bought a computer, configured it, then shipped it 3,000 miles to her home in Bellingham, WA, near the Canadian border. “Subtlety doesn’t run in the family,” she says laughingly. Around the same time, she chatted with childhood friend Tim O’Reilly about her experiences and he also encouraged her to write a book. “But who would publish it for such a relatively small market?” asked Keene. Only 2,500 children a year are diagnosed with the disease. “I will,” responded her friend, owner of the well-known computer book publishing firm, O’Reilly & Associates, Inc. A former paramedic and air traffic controller, Keene soon embarked upon a new career in publishing and is now a co-developer for a series of patient-centered guides published by O’Reilly. Three books already have been published, and two additional ones will be released this summer, along with a second edition of Childhood Leukemia. Titles include, Your Child in the Hospital, Working with Your Doctor and, coming this summer, Childhood Cancer: A Guide for Families, Friends & Caregivers of Children with Solid Tumors. The latter work is co-authored with Honna Janes-Hodder. Filling A Void The guides fill a void for those who are in “information pain,” says Keene. “They provide technical information in layman’s terms that anyone can understand.” The childhood leukemia book, which is some 500 pages in length and weighs more than two pounds, is organized sequentially for those walking through the diagnosis-treatment experience. “Parents should read the parts they need when they need them, and put the book down for awhile if they find it too intense,” suggests Keene. The book also features a section of before-and-after photographs. “We want parents to know there is hope that they will get their child back and that the roses will return to their cheeks,” she says, confidently, from her own experience. Before writing the guides, Keene and other O’Reilly associates surveyed the market to learn what was available. “There was nothing out there that helped prepare kids for the hospital, for example. And while there are lots of books on the doctor-patient relationship, most seem to be adversarial in nature. Our guide on working with doctors seeks to foster cooperation, “ she comments. An Electronic Community of Support Keene says there are many pediatric oncology list serves and discussion groups on the World Wide Web. Interested persons should visit the site, http://www.acor.org, then click on “join a list.” The largest list serv for pediatric cancers is PED-ONC, she says, adding that these networks provide more than information. They also offer vital support for those walking through the pediatric cancer experience. For instance, two women in Utah on one of the list servs conduct fundraisers in order to create baskets for distribution to pediatric oncology patients, reports Keene. The basket contents include pens, a phone card, a quilt, a hospital map, and other useful items, including a copy of Keene’s Childhood Leukemia. “It’s very gratifying to see this kind of grassroots support of families for one another,” says Keene. In another instance, subscribers to a list serv mobilized to support a Phoenix, Arizona mother, whose child died , by releasing hundreds of balloons containing the message, “Welcome to heaven, Brian,” all around the world at the time of the child’s funeral. “We’re there for each other at every stage of the process,” remarks Keene. In all, Keene seems excited about her many efforts to offer support in the area of pediatric oncology. “This [involvement] gives me an opportunity to take something positive from a horrendous experience and to do something that is helpful to others. It’s very heartening,” she says. To learn more about the O’Reilly patient guides, visit the web site at http://www.patientcenters.com/leukemia or contact O’Reilly & Associates, Inc., 101 Morris St., Sebastopol, California, 95472. (800) 998-9938. |
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