Childhood Leukemia: A Guide for Families, Friends, and Caregivers (Patient Centered Guides)

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9781565921917: Childhood Leukemia: A Guide for Families, Friends, and Caregivers (Patient Centered Guides)

This most complete parent guide available covers not only detailed and precise medical information about leukemia and the various treatment options, but also day-to-day practical advice on how to cope with procedures, hospitalization, family and friends, school, social and financial issues, communication, feelings, and, if therapy is not successful, the difficult issues of death and bereavement. Woven among the medical details and the practical advice are the voices of parents and children who have lived with leukemia and its treatments. As many parents have already found, advice from "veteran" parents can be a lifeline.

Obtaining a basic understanding of topics such as medical terminology, how drugs work, common side effects of chemotherapy, and how to work more effectively with medical personnel can only improve the quality of life for the whole family suffering along with their leukemic child. Having parents describe their own emotional ups and downs, how they coped, and how they molded their family life around hospitalizations can be a tremendous comfort. Just knowing that there are other kids on chemotherapy who refuse to eat anything but tacos or who have frequent rages can make one feel less alone.

Parents who read this book will encounter medical facts simply explained, advice to ease their daily life, and tools to be a strong advocate for their child.

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About the Author:

Nancy Keene has written or co-authored five health books for families. She is co-creator of the Patient-Centered Guides series and Editor of pediatric titles. Nancy is a tireless advocate for childrens health issues, including pediatric clinical trials, childhood cancer, late effects of childhood cancer treatments, pediatric pain relief, and emotional support for families. She frequently speaks for professional and parent groups and works on/with national pediatric advocacy organizations and committees.


"Keene has written a comprehensive handbook to serve as a road map for others, from diagnosis through treatment." —Library Journal, *starred* review and chosen for the prestigious Nursing Your Children's Health Collection

"This most complete parent guide available covers not only detailed and precise medical information about leukemia and the various treatment options from chemotherapy to bone marrow transplantation, but also day-to-day practical advice." —F. Leonard Johnson, M.D. Chief, Division of Pediatric Hematology/Oncology Oregon Health Sciences University

"What's compelling about Childhood Leukemia: A Guide for Families, Friends, and Caregivers is the amount of useful medical information and practical advice it contains.... As the mother of a two-time survivor of ALL-yes it can recur, in my daughter's case after a 14-year remission-I can vouch that the road to cure is bumpy, filled with life-threatening complications and requiring aggressive in-hospital care. Keene spells it all out.... A valuable resource to help parents and children regain their equilibrium after diagnosis and during the two to three years of treatment." —Patricia Dane Rogers, The Washington Post

"This wonderful book is an informative addition to the House library, and one we will recommend wholeheartedly. By providing this resource to the children and families staying here, you enable them to find a bit of hope and peace of mind in a time of great difficulty and confusion." —Peggy Enright, House Director, Boston Ronald McDonald House

"Of all the many kinds of help we had (and we had lots) Childhood Leukemia was the single best gift we received. It was the gift of knowledge, so we could ask intelligent questions about our daughter's care. It was the gift of security, allowing us to foresee much of what was coming, and giving us the tools we needed to cope. And it was the gift of hope, for we could see that many children do, indeed, get through this trying time, and come through the grueling treatment intact." —Kim Warren, parent of a child with leukemia (one of dozens of thank-you letters sent to the author)

"Faced with a diagnosis of a life threatening disease, parents of a newly diagnosed child with leukemia often struggle to understand the facts and explanations of the disease and treatment they face, while at the same time dealing with overwhelming feelings of fear, confusion and isolation. The great value of Nancy Keene's exceptional book is that it puts the facts and explanations into understandable terms while acknowledging and dealing with the emotional aspects as only parents who have had similar experience, can. This combination of science, clinical facts and humanism is a potent weapon for both new and seasoned parents who must travel this demanding path. It is also of enormous value to those of us who try to help parents understand and cope as our professional obligation." —Mark L. Greenberg, MD Professor of Paediatrics and Surgery, University of Toronto Senior Staff Oncologist, Hospital for Sick Children Chair, Paediatric Oncology Group of Ontario (POGO)

"Childhood Leukemia is the very best book on the subject that I have read, and I've read everything I could put my hands on. It is absolutely correct in the subject matter it covers and the approach. I wish someone had put a copy in my hands the day after the diagnosis. It literally will be a life-saving book." —Rebecca Laird, parent (one of dozens of thank-you letters sent to the author)

"This book is an invaluable reference for children, their family and their health care providers. It provides important information written in ways families can understand. Ms. Keene presents difficult and sometimes troubling information in a sensitive and balanced manner. I highly recommend it for patients, family members and health care providers." —Debra L. Friedman, MD Director, Division of Hematology-Oncology E. Bronson Ingram Chair in Pediatric Oncology Vanderbilt Children's Hospital

"Our 7-year-old daughter was diagnosed with ALL. We were immediately given a copy of your book by the hospital. Initially, we were reluctant to open it and face the information inside. However, once we decided to pull our heads from the sand, we have found Childhood Leukemia to be our absolute bible. Not only do we use it for general information, but we rely heavily on this book for reassurance in times of crisis (real or potential). I cannot imagine not having the information so close at hand and so well organized." —Jocelyn Hillman Mother of a leukemia survivor Board Member, Alex's Lemonade Stand Foundation

"This is the most comprehensive resource available for parents and caregivers of children diagnosed with leukemia. These families must become immediate experts and Childhood Leukemia: A Guide for Families, Friends & Caregivers presents up-to-date information in understandable language. Parents find the vignettes helpful, comforting and encouraging. We believe so strongly in this book that a copy is given to each family." —Mary McSherry, ACSW, LSW Social Worker, Division of Oncology, The Children's Hospital of Philadelphia

"This book is an extraordinary resource. In its pages the reader will find clear, concise, and understandable information about childhood leukemia. And even more powerfully, the reader will "hear" the voices of parents who share their experiences in their own words: what worked, what didn't, what helped, what hurt. Families, friends, and caregivers who use this book will have information and support at their fingertips, and a powerful tool with which to help young people with leukemia get what they need to claim their lives in spite of this disease and the toll it takes." —Kathy Ruccione, PhD, MPH, RN Co-Director of the HOPE (Hematology-Oncology Psychosocial and Education) Program Children's Hospital of Los Angeles

"I highly recommend Childhood Leukemia to all families of children with leukemia. It is an immediate help for the newly diagnosed parent and a comprehensive reference for the subsequent years of treatment. This book covers everything-and I mean everything-that a parent needs to know about the issues surrounding treatment for childhood leukemia. It amazes me that for a disease as rare as childhood leukemia, someone as talented a writer as Nancy took the time to write such a complete and useful book." —Patty Feist, MS Parent a survivor of ALL, Webmaster, Pediatric Oncology Resource Center

"Childhood Leukemia was and is an invaluable resource for me. I discovered it a few months into my daughter's leukemia journey and have read and reread it. When Katie was first diagnosed I was told mountains of information, but was unable to absorb much of it due to the initial shock of having a child with cancer. Having all that information and much more at my fingertips has been a huge help. Sometimes it helped me just to know what questions to ask. Even now, months after treatment has ended, I continue to refer to the book for information about the different drugs that were used; I also use the book to help other parents who have questions." —Pat Lee Mother of a leukemia survivor

"Nancy Keene, whose daughter survived childhood leukemia, offers help and support in this comprehensive guide for families, friends, and health care providers of childhood leukemia patients. Leukemia Society staff and volunteers regularly use this guide as a valuable reference tool. 'This is an excellent guide for living and coping with childhood leukemia,' says Hildy Dillon, Director of the Information Resource Center at the Leukemia Society of America." —NewsLine Leukemia and Lymphoma Society

"This is the definitive book for lay people, parents of children with cancer, and survivors of childhood cancer themselves. We routinely provide a copy to all of our patients and families who are enrolled in our long-term survivor follow-up clinic for their education. It's a treasure chest of information." —Sharon B. Murphy, MD Chief, Division of Hematology/Oncology Children's Memorial Hospital Chicago, IL

"I am the great grandmother to a little four-year-old girl who has the type of leukemia known as ALL ... I am 90 years old and was a bookseller for 25 years ... Your book is so complete and so helpful in every way, that I couldn't resist sending you my compliments for writing it. Bless you." —Alice H. Sobey (one of dozens of thank-you letters sent to the author)

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Nancy Keene
Published by O'Reilly and Associates (1997)
ISBN 10: 1565921917 ISBN 13: 9781565921917
New Paperback Quantity Available: 1

Book Description O'Reilly and Associates, 1997. Paperback. Book Condition: New. Bookseller Inventory # DADAX1565921917

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