Childhood Leukemia Resources This list includes resources you're likely to use most often and those that are the richest sources of information about childhood leukemia. Entries in each category are listed in alphabetical order, not by importance. Helpful organizations American Cancer Society (ACS) National Office 1599 Clifton Road NE Atlanta, GA 30329-4251 (800) ACS-2345 www.cancer.org The American Cancer Society has many national and local programs to help cancer patients with travel, lodging, and emotional support. They publish numerous pamphlets and booklets on a variety of cancer-related topics. They also offer a 24-hour support line for both English- and Spanish-speaking cancer patients. Blood & Marrow Transplant Information Network (formerly BMT Newsletter) 2900 Skokie Valley Road, Suite B Highland Park, IL 60035 (847) 433-3313 or toll-free (888) 597-7674 Fax: (847) 433-4599 Email: help@bmtnews.org www.bmtnews.org Publishes Blood & Marrow Transplant Newsletter, for bone marrow, peripheral stem cell, and cord blood transplant patients, and books on bone marrow and stem cell transplantation. Also available are the Transplant Center Database of more than 250 transplant programs in the US and Canada, a resource directory, an attorney referral service for those having difficulty persuading their insurer to pay for treatment, the Patient-to-Survivor Link Service, and a comprehensive web site. Candlelighters Childhood Cancer Foundation 3910 Warner Street Kensington, MD 20895 (800) 366-CCCF www.candlelighters.org Services include a yearly bibliography and resource guide, quarterly newsletter, youth newsletter, and various handbooks to help families of children with cancer. Childhood Cancer Ombudsman Program P.O. Box 595 Burgess, VA 22432 Fax: (804) 580-2502 Email: gpmonaco@rivnet.net This free service helps children with cancer and their families who are experiencing difficulties in gaining access to appropriate education, medical care, healthcare cost coverage, and meaningful employment. Services include medical library searches, a second opinion program, and help resolving problems with insurance or discrimination. Leukemia and Lymphoma Society 600 Third Avenue, 4th Floor New York, NY 10016 (212) 573-8484 or (800) 955-4LSA www.leukemia.org This organization provides financial assistance to families (up to $750/year for outpatients), funds research, sponsors a national program in education for the public and the medical community, and publishes a large number of booklets on cancer-related topics. National Cancer Institute (NCI) Bethesda, MD 20892 (800) 4-CANCER http://cancernet.nci.nih.gov A division of the US National Institutes of Health, the NCI has an enormous web site, numerous statements, booklets, and books about cancer treatment and care, and a hotline to help cancer patients with a variety of issues. To learn of the newest treatments available, call (800) 4-CANCER and ask for the PDQ (Physicians Data Query) summary for childhood leukemia. These free statements explain the disease, state-of-the-art treatments, and ongoing clinical trials. There are two versions available: one for patients that uses simple language and contains no statistics and one for professionals that is technical, thorough, and includes citations to the scientific literature. The PDQ can also be found on the Internet at http://cancernet.nci.nih.gov/. Childhood leukemia Internet support groups Internet support groups (also called listervs) are free email discussions on specific topics of interest. Each subscriber receives a copy of an email sent by any member of the group. Some active groups generate dozens of messages a day. If you subscribe to the "digest" mode, you will receive one email containing all of the messages posted that day. Email discussion groups are an excellent way to connect with people in similar circumstances. Several Internet support groups discuss issues related to childhood leukemia. ACOR (Association of Cancer Online Resources) hosts numerous cancer email discussion groups on a variety of topics including PED-ONC, ALL-KIDS, PED-ALL, and 4-YOUTH (for teens with cancer). ACOR offers a handy automatic subscription feature for discussion mailing lists at www.acor.org. Click on mailing lists (on the left navbar), then click on the group you are interested in joining. OncoLink, at the University of Pennsylvania, has an online FAQ (document answering frequently asked questions) about cancer listservs at http://oncolink.org/resources/faq/listserv.html. Books about leukemia Childhood Leukemia: A Guide for Families, Friends, and Caregivers, Second Edition, by Nancy Keene. O'Reilly & Associates, Inc., 1999. The Cure of Childhood Cancer: Into the Age of Miracles by John Lazlo. Rutgers University Press, 1996. General cancer reading and reference material Autologous Stem Cell Transplants: A Handbook for Patients by Susan Stewart. The Blood & Marrow Transplant Information Network, 1999. (888) 597-7674. Bone Marrow Transplants: a Book of Basics for Patients, by Susan Stewart. Blood & Marrow Transplant Information Network, 1992. (888) 597-7674. Candlelighters Childhood Cancer Foundation: Bibliography and Resource Guide. 1994 with an update in 1998. (800) 366-CCCF. Candlelighters Childhood Cancer Foundation Canada Resource Catalog. 1999. (800) 363-1062 (Canada only) or (416) 489-6440. Childhood Cancer Survivors: A Practical Guide to Your Future, by Nancy Keene, Wendy Hobbie, and Kathy Ruccione. O'Reilly & Associates, Inc., 2000. Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer by Michael Lerner. The MIT Press, 1996. Informed Decisions: The Complete Book of Cancer Diagnosis, Treatment, and Recovery by Gerald P. Murphy, Lois B. Morris, and Dianne Lange. Viking, 1997. What Are Clinical Trials All About? National Cancer Institute. Free. (800) 4-CANCER. Some Things Change and Some Things Stay the Same by Fred Rogers. American Cancer Society. (800) ACS-2345. Why, Charlie Brown, Why?: A Story About What Happens When a Friend Is Very Ill By Charles M. Schulz. Topper Books, 1990. Available as a book or videotape. For video availability, call the Leukemia and Lymphoma Society, (800) 955-4LSA. Working with Your Doctor by Nancy Keene. O'Reilly & Associates, Inc., 1998. Online resources CancerGuide www.cancerguide.org Steve Dunn, a cancer survivor, clearly explains cancer types and staging, chemotherapy, pathology reports, and the pros and cons of researching your own cancer. He also recommends books and includes inspirational patient stories. He has links to many of the best cancer sites on the web. CancerNet http://cancernet.nci.nih.gov/ An NCI sponsored comprehensive source of cancer information including types of cancer, treatment options, clinical trials, genetics, coping, support, resources, and cancer literature. CancerNet is one of the most important information sources for cancer patients on the Net. CanSearch: Online Guide to Cancer Resources www.cansearch.org/canserch/canserch.htm Service of the National Coalition for Cancer Survivorship that leads you step-by-step through an online search. Clinical Trials http://clinicaltrials.gov/ A consumer-friendly database sponsored by the National Institutes of Health that provides information on more than 4,000 federal and private medical studies involving patients at more than 47,000 locations nationwide. GrannyBarb and Art's Leukemia Links www.acor.org/diseases/hematology/Leukemia/leukmain.html The best adult/child leukemia information on the Internet. OncoLink www.oncolink.org/disease/index_ped.html OncoLink was founded in 1994 by University of Pennsylvania cancer specialists with a mission to help cancer patients, families, healthcare professionals, and the general public get accurate cancer-related information at no charge. This site provides information on symptom management, resources for children and families, psychosocial support, personal experiences, and descriptions of specific pediatric cancers. It also has a gallery of art created by children with cancer. Pediatric Oncology Resource Center http://acor.org/diseases/ped-onc Patty Feist, a chemist and the mother of a childhood cancer survivor, has created the best source of information about pediatric cancers on the Internet. PubMed www.ncbi.nlm.nih.gov/PubMed The National Library of Medicine's free search service provides access to 9 million citations (short abstracts from technical journals) in MEDLINE and other related databases. It also includes FAQs, news, and clinical alerts. PharmInfoNet http://pharminfo.com/ Site that provides a drug database, an FAQ that answers questions about specific drugs, and press releases from pharmaceutical companies. Patient-Centered Guides Childhood Leukemia Center www.patientcenters.com/leukemia Information from Childhood Leukemia: A Guide for Families, Friends & Caregivers, Second Edition, by Nancy Keene. O'Reilly & Associates, Inc., 1999. Free air services Air Care Alliance (800) 296-1217 www.aircareall.org ACA is a nationwide association of humanitarian flying organizations. Founded in 1990, ACA members have safely flown 24,000 patients to and from medical treatments. Corporate Angel Network, Inc. (CAN) Westchester County Airport, Building 1 White Plains, NY 10604 (914) 328-1313 Fax: (800) 328-4226 A nationwide nonprofit program designed to give patients with cancer the use of available seats on corporate aircraft to get to and from recognized cancer treatment centers. Patients must be able to walk and travel without life-support systems or medical attention. There is no cost or financial need requirement. This fact sheet was adapted from Childhood Leukemia: A Guide for Families, Friends, and Caregivers, Second Edition by Nancy Keene, © 2001 by Patient-Centered Guides. Hundreds of additional resources are listed in the book's appendices. For more information, call (800) 998-9938 or see www.patientcenters.com.