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Patient-Centered Guides

March 21, 2002

Candlelighters Childhood Cancer Foundation
Has Grant to Donate Books to Parents

SEBASTOPOL, CA -- Candlelighters Childhood Cancer Foundation announces that 2,500 free copies of the most widely respected books on childhood cancer are now available to families that cannot afford to purchase a book. These donations are intended to create equitable access of information to all families of children with cancer, and are made possible with a grant from an anonymous charitable foundation.

Each year in the United States, approximately 12,600 children under the age of 20 are diagnosed with cancer. This means that each school day, 46 children-two entire classrooms of children-are diagnosed with cancer. Although the cure rate has jumped in thirty years from a meager 10% to today's overall survival rate of almost 70%, childhood cancer remains the number one disease killer of children under the age of 15.

A diagnosis of childhood cancer is devastating for the family. Childhood cancer is treated aggressively, often with a combination of chemotherapy, radiation, and surgery, at a time of life when bodies are growing and developing. Treatment has a significant long-term impact on children's endocrine, heart, and cognitive functions. Additionally, parents of children with cancer are often young, have a limited income, and they have other children. One parent often needs to give up a job to take care of child being treated for cancer.

Treatments can last from one year to several years depending on diagnosis. The long-term economic impact on the family is huge. This financial strain is even greater in the single parent family, often forcing the family into financial ruin. It is very important that all families facing a childhood cancer diagnosis have access to accurate information on their child's diseases, treatment, and late effects. Today, doctors have less time, treatment options are more complex, and people increasingly need and want to partner with their doctors in making healthcare decisions. Families must provide more care themselves, in these days of short hospital stays, nursing shortages, and outpatient treatments.

Families facing childhood cancer are in crisis at diagnosis. Parents travel quickly to the nearest children's hospital without time to pack and may make life-impacting decisions before the terrible diagnosis can be understood (or even fully believed). It is hard to hear and understand all of the information provided by doctors, yet parents need accurate information that clearly explains the disease, treatment, and side effects in order to make good decisions about their child's treatment. They also need to know that others have gone before them and that most children survive. Connection with others in similar circumstances is a lifeline.

The needs are great, and Candlelighters Childhood Cancer Foundation is a primary provider of essential programs and services required by families of children with cancer. With this grant, Candlelighters has purchased 2,500 books for families that cannot afford to purchase a book, to create equitable access of information to all families of children with cancer. The books include:

  • Childhood Leukemia: A Guide for Families, Friends, and Caregivers, 2nd ed., Nancy Keene.
  • Childhood Cancer: A Parent's Guide to Solid Tumor Cancers, Janes-Hodder & Keene.
  • Childhood Brain & Spinal cord Tumors: A Guide for Families, Friends, and Caregivers. Shiminski-Mahar, Cullen, Sansalone.
  • Childhood Cancer Survivors: A Practical Guide to Your Future. Keene, Hobbie, Ruccione.
These books, written by parents of children with cancer and medical professionals, cover the entire experience of cancer in a child. Parents who read the books encounter medical facts explained simply, find advice that eases their daily lives, and feel empowered to advocate strongly for their child. Technical information is presented in easy-to-understand language and is blended with the stories of dozens of veteran families. The books, part of the Patient-Centered Guides series (www.patientcenters.com), are deeply appreciated by parents and cited for excellence by third-party reviewers such as Library Journal.

The Candlelighters Childhood Cancer Foundation
P.O. Box 498
Kensington MD 20895-0498
800-366-2223
Email: info@candlelighters.org
Web: http://www.candlelighters.org

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