Childhood Cancer: A Parent's Guide to Solid Tumor Cancers

Front Cover
Childhood Cancer Guides, Jul 1, 2002 - Health & Fitness - 537 pages
This second edition of the most complete parent guide available features detailed and precise medical information about solid tumor childhood cancers, including neuroblastoma, Wilms tumor, liver tumors, soft tissue sarcomas, and bone sarcomas. In addition, it offers day-to-day practical advice on how to cope with procedures, hospitalization, family and friends, school, financial issues, and communication. Woven among the medical details and the practical advice are the voices of parents and children who have lived with cancer and its treatments. As many parents know, 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 improves the quality of life for the whole family. 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 find understandable medical infomation, obtain advice that eases their daily life, and feel empowered to be strong advocates for their child. It also contains a personal treatment summary and long-term follow-up guide for your child to keep as a permanent record.
 

Contents

Diagnosis
1
Coping with Procedures
12
Family and Friends
41
Forming a Partnership with the Medical Team
67
Clinical Trials
83
Venous Catheters
96
Hospitalization
114
Neuroblastoma
124
Radiation Therapy
283
Surgery
297
Bone Marrow and Stem Cell Transplantation
306
Record Keeping and Finances
324
Nutrition
341
School
359
Siblings
383
Feelings Communication and Behavior
401

Wilms Tumor
137
Soft Tissue Sarcomas
150
Bone Sarcomas
164
Liver Cancers
182
Retinoblastoma
193
Sources of Support
206
Chemotherapy
223
Common Side Effects of Chemotherapy
260
End of Treatment and Beyond
422
Relapse
439
Death and Bereavement
447
Appendices
469
Index
521
About the Authors
539
Colophon
540
Copyright

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About the author (2002)

Honna Janes-Hodder's youngest son Matthew was diagnosed with neuroblastoma on his third birthday and passed away at age 7. She loved, cared for, and advocated for Matthew throughout his long struggle with cancer. Honna is the founder of ChildCan, The Childhood Cancer Research Association of Newfoundland and Labrador, Inc. For several years, Honna managed five of the online pediatric discussion groups for the Association of Cancer Online Services, which provide support and reliable information for families dealing with childhood cancer. Honna is a member of the Children's Cancer Group's Patient Advocacy Committee, the Newfoundland and Labrador Palliative Care Association, and the Canadian Hospice Palliative Care Association. Nancy Keene, a well-known writer and advocate for children with cancer, is the parent of a 22-year survivor of high-risk acute lymphoblastic leukemia. She is one of the founders of the nonprofit Childhood Cancer Guides, and she has written many books for families of children with cancer, including Childhood Leukemia; Your Child in the Hospital; and Chemo, Craziness, and Comfort. She co-authored Childhood Cancer: A Parent's Guide to Solid Tumor Cancers and Childhood Cancer Survivors: A Practical Guide to Your Future and edited Educating the Child with Cancer. She served as chair of the Patient Advocacy Committees of both the Children's Cancer Group (CCG) and Children's Oncology Group (COG)-- consortiums of researchers from more than 200 institutions that treat children with cancer. Ms. Keene has been interviewed on National Public Radio about childhood cancer survivorship, frequently speaks to professional and parent groups, and has participated in online pediatric cancer support groups (www.acor.org) since they began in 1996.

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