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* Information about cancer from: The National Cancer Institute
* Information about cancer from: The American Cancer Society
* Find a cancer camp near you!

Jump to General Links Support Groups & Bereavement Camps & Retreats Insurance & Finance Homecare/Hospice Books/Videos

The American Brain Tumor Association (www.abta.org): The American Brain Tumor Association exists to eliminate brain tumors and to meet the needs of patients and families. Within the ABTA web site, find help in their "Support" section to read other people's stories of hope, get information on managing side effects and symptoms, and connect to a pen pal.

Association of Cancer Online Resources (www.acor.org): The Association of Cancer Online Resources, Inc. (ACOR) offers a large collection of cancer-related Internet resources. ACOR aims to provide information and support to cancer patients and those who care for them through the creation and maintenance of cancer-related Internet mailing lists and Web-based resources. They provide subscribers with access to varied, credible and current information sources through and improve communication between patients and health care professionals through advocacy in a variety of public forums, including the media and professional journals.

Believe In Tomorrow Children's Foundation (www.believeintomorrow.org): Believe In Tomorrow provides exceptional hospital and retreat housing services to critically ill children and their families. Keeping families together during a child’s medical crisis, and the gentle cadence of normal family life has a powerful influence on the healing process.  Believe In Tomorrow owns 5 retreat houses, located on the Atlantic Ocean, Allegheny Mountains, North Carolina and Delaware.  As the only retreat housing program in the United States, Believe In Tomorrow provides an escape from the stressful routine of medical treatments for families nationwide.  Believe In Tomorrow also has two residence houses near Johns Hopkins Hospital in Baltimore, MD and St. Casimir, as well as the Military Initiative, which prioritizes military families with critically ill children at two of their retreat houses.  For more information please call 800-933-5470 or visit their Web site above.

Cancer Care (www.cancercare.org): Cancer Care is dedicated to providing emotional support, information, and practical help to people with cancer and their loved ones. Their web site contains a variety of information, but most noted, The Helping Hand Resource Guide, which is a searchable service database, and The Cancer Care Bookstore, where individuals can purchase recommended reading right online. Additionally, this organization offers a toll-free Counseling Line and teleconference programs, which can be accessed by calling 1-800-813-HOPE.

The Dream Foundation (www.dreamfoundation.org): Grants wishes to cancer patients ages 21 and over.

I’m a Kid Foundation (http://www.imakidfoundation.org/) is a nonprofit organization devoted to supporting children with medically related hair loss due to cancer, alopecia, or other ailments.

Oncology by OncologyStat

A compendium of information on worldwide cancer care and prevention awareness, including journal articles, clinical trial results, and more. Newly updated - Colon Cancer Resources from Elsevier’s OncologySTAT.

Award-Winning Software for Leukemia & Solid Tumor Patients
Discounted by up to 45% for cancer families - order in June and pay only $20/CD!

The Conquering Cancer Network (CCN) (www.conqueringcancer.net/) offers adolescents with solid tumors the chance to explore and connect to resources designed just for them. It's done in a fun, interactive setup and includes interviews by some of Special Love's star campers!

Kidz with Leukemia: A Space Adventure (www.kidzwithleukemia.com): An interactive CD-ROM game for children with leukemia and their families. The program includes entertaining games, resource guides, and video interviews with patients and siblings. A great introduction to leukemia treatment.

Cancer Hope Network (http://www.cancerhopenetwork.org): The Cancer Hope Network is a not-for-profit organization that provides free and confidential one-on-one support to cancer patients and their families. The program is based on matching cancer patients and/or family members with trained volunteers who have themselves undergone and recovered from a similar cancer experience. For more information, visit www.cancerhopenetwork.org or call 1-877-HOPENET.

The Compassionate Friends (http://www.compassionatefriends.org): The Compassionate Friends is a national self-help support organization offering friendship and understanding to families grieving the death of a child. Their mission is to assist families in the positive resolution of grief following the death of a child and to provide information to help others be supportive. Their web site, at www.compassionatefriends.org, contains a resource catalog of books, videos and cassette tapes that may assist in the preparation and grieving process. There are also links to local chapters providing contacts for support community groups.

Growth House (http://www.growthhouse.org): This award-winning web site is an international gateway to resources for life-threatening illness and end of life care. Their primary mission is to improve the quality of compassionate care for people who are dying through public education and global professional collaboration. Though not cancer specific there is a great deal of information on death, dying, grief and loss that is extremely helpful and informative. The entire Growth House site includes "best of the net" resources around the world that meet specific review standards.

William Wendt Center for Loss and Healing (http://www.lossandhealing.org): The William Wendt Center for Loss and Healing is a non-sectarian, non-profit organization offering guidance, information, and support for people living with illness, loss, and bereavement. The Center counsels and supports adults, children, and families, Located right here in DC, the Center provides support groups and resources valuable in coping with the impact of cancer. For more information visit www.lossandhealing.org or call 202-333-4880.

Hospice of Northern Virginia: The Hospice of Northern Virginia runs a wide variety of grief and bereavement support groups. For a complete and current listing of group offerings, call 703-538-2065 (Arlington/Alexandria/Falls Church/Fairfax), 703-777-7866 (Loudoun County), or 703-32-6707 (Prince William County).

My Friend's House: The Inova Health System sponsors various support groups for children and teens with cancer, as well as other children and teens in the household dealing with the illness and/or loss of their sibling. For a current list of groups, call 703-208-5611.

Life with Cancer Family Center: This Fairfax-based organization runs monthly support groups. Call 703-208-5611 for details.

The Never Ending Squirrel Tale (http://www.squirreltales.com): The Never-Ending Squirrel Tale site, http://www.squirreltales.com/, is a place to go for practical tips and encouragement for the parents of kids with cancer. Its not as "professional-looking" as some other sights, but written by parents who have been through having a child with cancer, its approach is refreshing and its content thorough. The site contains everything from ideas on how to handle various difficult situations, to stories, poems and photographs of kids. There is also a wide variety of links to other sites, including kid's sites, bereavement, hospice, counseling, airlifting, etc. under "Resources".

Pediatric Oncology Resource Center (http://www.acor.org/ped-onc/): The Pediatric Oncology Resource Center, www.acor.org/ped-onc, is a comprehensive web site for families and providers of children with cancer. The site includes clinical information such as descriptions of various diseases and treatment, as well as information on managing various family issues such as financial needs, emotional support, books to read and summer camps. The site also includes a very special area, called Time To Go, providing guidance and support when it appears a child has failed treatment and the family must prepare for the child's passing.

Taking the Fear Out of Cancer (http://www.takingthefearoutofcancer.com): A comprehensive guide with links to information, support groups, and many other resources for families dealing with a cancer diagnosis.

COCA International (http://www.coca-intl.org): Children's Oncology Camps Association International--Check here for a list of all the registered cancer camps in North America!

Camp Begin-Again, Point Hope Day Camp and Point Hope Retreat for Teens: Camp Begin-Again is a free weekend camp for children grieving the loss of a loved one. This camp, although not appropriate for the ill child, might be perfect for siblings, should the ill child pass away. The camp is sponsored by the Hospice of Northern Virginia and runs twice each summer. Point Hope Day Camp (for younger children) and Point Hope Retreat for Teens are similar camps that runs in the spring Additional information may be obtained by calling 703-538-2043.

Camp Starfish: Camp Starfish is another camp geared toward siblings loss. The camp is ages 6 to 14 and is designed specifically for those grieving the loss of a loved one. Camp Starfish is run by Hospice of Washington and runs once in the summer and once in the fall. For more information, call 202-895-0124.

Health Insurance Portability and Accountability Act (HIPAA) http://www.cms.hhs.gov/HealthInsReformforConsume/

The Health Policy Institute http://www.healthinsuranceinfo.net/

America’s Health Insurance Plans http://www.ahip.org/

Insure Kids Now! http://www.insurekidsnow.gov/

The Cancer Legal Resource Center http://www.lls.edu/academics/candp/clrc.html

The Childhood Cancer Ombudsman Program - http://www.childhoodbraintumor.org/

The Children with Disabilities Center - http://www.nichcy.org/

The Patient Advocate Foundation - http://www.patientadvocate.org/

The Foundation for Children with Cancer (www.childrenwithcancer.org/) helps families and children nationwide, to pay for everyday living expenses like housing, transportation and utilities – costs that impact any family dealing with pediatric cancer; costs that typical insurance doesn’t cover.

The Kelly Anne Dolan Memorial Fund (http://www.kadmf.org) is a non-medical resource center providing advocacy, information, resources and financial assistance for the uninsured needs of families caring for terminally, critically or chronically ill children. This fund provides direct financial assistance by request for things such as transportation cost, parking, phone bills, utility bills, rent, camps, child care, clothing, equipment and the like. The Fund has also produced a very helpful educational video entitled "Financial Management During Crisis". For more information, call the Home Office at 215-643-0769 of the Local National Capitol Area Chapter at 703-435-4599. Please note however, that requests for assistance must be made through a social worker, case manager or physician, so if in need, please speak with a Lombardi staff person.

Needy Meds.com (www.needymeds.com) is a clearinghouse of resources for finding care and medicine at reduced rates. You can search for disease-specific help or look under "children."

Children's Hospice International (http://www.chionline.org): Children's Hospice International (CHI) was founded as a non-profit organization to provide a network of support and care for children with life-threatening conditions and their families. CHI recognizes the right and need for children and their families to choose health care and support whether in their own home, hospital, or hospice care facility. For more information on CHI and how they may help you, visit www.chionline.org or call 800-2-4-CHILD. Web site includes cool links for kids.

Get Palliative Care (http://www.getpalliativecare.org):  Valuable information for patients and families coping with serious, complex illness including a palliative care Provider Directory , a definition and detailed description of what palliative care is, direct links to palliative care-related organizations and more.

Hospice Foundation of America (http://www.hospicefoundation.org): The Hospice Foundation of America is a not-for-profit organization that provides leadership in the development and application of hospice and its philosophy of care. Through programs of professional development, research, public education and information, Hospice Foundation of America assists those who cope either personally or professionally with terminal illness, death, and the process of grief. Their web page, www.hospicefoundation.org, provides insights on hospice care, and how to select a hospice and information on managing grief and loss. Through their web site, you can subscribe to their "Journey's" newsletter, packed with a variety of valuable information and articles.

Hospice Net (http://www.hospicenet.org): Hospice Net, located at www.hospicenet.org, is a very comprehensive, user friendly layman's web site on hospice care. The site gives a thorough explanation of what hospice care is and what to expect, answers commonly asked questions asked by patient and caregiver alike, provides links for finding a hospice and questions to ask, and supplies resources on dealing with death and dying. It's an excellent site.

Last Acts (http://www.lastacts.org): Last Acts is a call-to-action campaign to improve care at the end of life. The organization's goals are to bring death related issues out in the open and help individuals and organizations pursue better ways to care for the dying. Last Acts is more geared toward medical professionals than families, but some valuable resources may be found through the searchable resource guide on their web site located at www.lastacts.org. They may also be contacted by telephone at 703-827-8771.

National Hospice and Palliative Care Organization (http://www.nhpco.org): The National Hospice and Palliative Care Organization is dedicated to advancing the philosophy and practice of hospice care to meet the unique needs of each terminally ill person and his or her family and to serve as a voice and resource for its members. Their official web site, www.nhpco.org, contains information on what hospice is as well as how to find an appropriate one. The web site isn't as user friendly as others, and a bit more geared toward medical professionals, but still contains valuable information. To contact the NHPCO by phone call 703-243-5900.

Local Hospice Programs Offering Pediatric Service
Hospice of Northern Virginia: Serving Northern Virginia. Call 703-534-7070. Ask for Cathy Fuentes, who specializes in Pediatrics.

Visiting Nurses Association of Washington, DC: Serving southern Maryland and the District. Call 202-882-3988. Ask for Diane Fields, who specializes in Pediatrics.

Jewish Social Service Agency and Jewish Community Hospice: Serving Maryland (Gaithersburg area). Call 301-990-6880.

Hospice of Prince George's County: Serving Prince George's County. Call 301-499-0550.

Videos

Childhood Cancer Family Resource "My Hair is Falling Out ... Am I Still Pretty?" This is a Childhood Cancer Education Video and the 1996 Parents' Choice Silver Honor Winner. They have developed a workshop and workbook that supports the film and have adapted the workshop for teachers, so that they can present it to their students. Call 800-221-3170 or email CancerEd@aol.com for more information.

"Growing Up Fast: Teens with Cancer Going Back to School." Offers coping skills for teen cancer patients as they return to school and also gives advice to teachers and peers about how to be supportive. Available at www.danya.com/products_GrowingUp.asp.

Books on Cancer

Young People with Cancer. A Handbook for Parents. NIH/NCI

The Normal One by Jeanne Safer, PhD. What is it like to grow up with a sibling who is difficult or damaged? Few bonds in our lives are as psychologically and emotionally significant as the ones we share with our sisters and brothers, although little has been written about this formative relationship. In this first-of-its-kind book, psychotherapist Jeanne Safer takes us into the hidden world of problem siblings and explores the far-reaching effects on the lives of those who are considered the "normal ones."