|Special Love is not responsible for the content or links of the following sites. If you discover a broken link or inappropriate content, please notify us at 1-888-930-2707 or by email. If the text formatting below appears irregular, try hitting your “refresh” key (F5).|
|* Information about cancer from: The National Cancer Institute
* Information about cancer from: The American Cancer Society
* Find a cancer camp near you! Other Great Links Merchandise for Sale Support Groups & Bereavement Camps Comprehensive Care Insurance Financial Aid
|Links for Kids|
|These sites, though not scientifically based, may provide additional support, encouragement and fun.|
|Bandaids and Blackboards (http://funrsc.fairfield.edu/~jfleitas/contents.html): This site is a resource to help those growing up with a chronic illness and their parents. There are separate areas for kids, teens and adults.|
|Cancer Kids (www.cancerkids.org): Cancer Kids is a web-based organization with one goal: to help children with cancer tell their stories to the world. Their web site, www.cancerkids.org, contains the personal web pages of children who are battling cancer and a Wall of Memory to commemorate those who have been lost to this terrible disease.|
|Chemo to the Rescue! is an engaging online book that explains leukemia, chemotherapy, and what it’s like to go to the hospital for treatment. http://www.chemo-to-the-rescue.com/default.aspClick here to read it!|
|The JSF Foundation (www.jsffoundation.com): A website that focuses on support for neuroblastoma research in memory of Justin Foster. Check out his favorite games on his links page!|
|Kids Cancer Network (http://kidscancernetwork.org): Creators of “The Funletter,” a colorful on-line newsletter/activity sheet that’s designed especially for kids with cancer, plus lots of other great kid-friendly activities and information.|
|Kids Health for Kids (kidshealth.org/kid/health_problems/cancer/cancer_kinds__RR.html): This site is geared toward kids with cancer. It offers practical information at a level children can understand. Very fun and highly recommended site for kids to visit.|
|ReMission (http://www.re-mission.net/) is an awesome 3D game where you control Roxie, a female nanobot, as she jets through young kids’ bodies, blasting away their cancer and helping restore them to health. Truly a state-of-the-art game (you’ll need a decent video card), ReMission is available FOR FREE from Special Love! Give us a call at 888-930-2707 for more information.|
|The Starlight Starbright Foundation (www.slsb.org/): Starlight Starbright Children’s Foundation’s focus is to lift the spirits of seriously ill kids and their families at times of great stress and hardship. Services are provided for seriously, chronically and terminally ill children, aged 4 through 18 years. Starlight offers a variety of programs and services including Wish-Granting, Starlight Rooms, Starlight Fun Centers, PC Pals, and Kids Activity Network excursions. These programs provide a vital outlet for children suffering from pain and the depression created by stress and isolation. Programs are administered and wishes granted throughout the 50 states and internationally through local chapters.|
|SuperSibs (www.supersibs.org) is a national organization that supports, honors and recognizes brothers and sisters of cancer patients who are ages 4-18. Ongoing programs are available and several of Special Love’s BRASS campers participate!|
|Other Great Links|
|Ability OnLine Support Network (www.ablelink.org): Ability OnLine is an electronic mail system that connects young people throughout North America with disabilities or chronic illness to disabled and non-disabled peers and mentors, providing opportunities to form friendships, build self-confidence, exchange information, and share hope and encouragement through email messages. With an extensive links page, Ability OnLine is also a valuable resource for families and friends anxious to know more about an illness and help manage it.|
|The Air Care Alliance (http://www.aircareall.org/): The Air Care Alliance is a nationwide league of humanitarian flying organizations whose volunteer pilot members are dedicated to community service. This site will introduce you to them and to all the groups they list whose volunteers perform public benefit flying for health care, patient transport, disaster relief, educational experiences for youth, environmental support, and other missions of public service.|
|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.|
|American Childhood Cancer Organization (http://www.acco.org/): helps children diagnosed with cancer through advocacy, education (they are the largest provider of free childhood cancer books in the country), and awareness.|
|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.|
|Bone Marrow Transplant Information Network (www.bmtnews.org): This web site is designed to provide essential information to individuals contemplating or awaiting bone marrow transplant.|
|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.|
|Cancer Nutrition Info, LCC (www.cancernutritioninfo.com): A comprehensive guide to nutritional issues encountered by cancer patients, including dietary restrictions, advice, and other resources.|
|Candlelighters Childhood Cancer Foundation (www.candlelighters.org): The Candlelighters Foundation is an international nonprofit organization dedicated to educating, serving, supporting and advocating for families of children of cancer, survivors of childhood cancer, and the health care professionals who care for them. For more information contact their National Toll-free Line at 800-366-2223 or visit their web site at www.candlelighters.org.|
|CarePages are free, private, personalized Web pages available to Special Love patients and families that help you stay in touch before, during and after a hospital stay, or any time care giving is needed. The service allows you control over communication and provides an easy way for friends and loved ones to respond with messages of support. Click here to Create a CarePage!|
|Chemo Care: Chemotherapy and Beyond (http://www.chemocare.com/)
Professional ice skater Scott Hamilton’s chemotherapy site offers the latest chemo information for cancer patients and their families, caregivers and friends.
|Children’s Cancer Resources on the Internet (http://childrenscancer.20m.com): Information for Parents of Children with Cancer.|
|CiteHealth (http://citehealth.com/) offers reports for people researching their health care providers’ quality and communities at no cost.|
|Cure Search (www.curesearch.org) is a joint venture of The National Childhood Cancer Foundation and The Children’s Oncology Group: and is dedicated to reducing the devastating impact of cancer on infants, children, teens and young adults by supporting clinical and laboratory research on cancer causes, treatments, and cures, and by education and advocacy for the needs of children with cancer and their families. Their web site provides general information, legislative updates as well as inspiration from other children and families who’ve experienced cancer. If you’d like information but don’t have web access, call 1-800-458-6223.|
|The Dream Foundation (www.dreamfoundation.org): Grants wishes to cancer patients ages 21 and over.|
|Gold Ribbons for Childhood Cancer, an Awareness Campaign (http://goldribbons.com): The gold ribbon is the official ribbon of childhood cancer awareness, endorsed by Candlelighters Childhood Cancer Foundation and the National Childhood Cancer Foundation.|
|Heavenly Hats (www.heavenlyhats.com): Donates brand-new hats to cancer patients who lose their hair due to cancer or the treatment of cancer. Program has donated over 40,000 brand-new hats to over 160 hospitals around the United States and worldwide.|
|Hopecam (www.hopecam.org): Provides computers to homebound cancer patients, allowing children to stay connected – using a high speed internet connection and web camera – to school friends during their treatment.|
|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.|
|The Livestrong Foundation (www.livestrong.org): The Livestrong Foundation believes that in your battle with cancer, knowledge is power and attitude is everything. Livestrong provides the practical information and tools people living with cancer need to live strong. They serve their mission through four core program areas: education, advocacy, public health and research. For more information, visit www.livestrong.org.|
|The Lancet Oncology Journals: Listen to free podcasts for author interviews and expert discussions covering international issues relevant to oncology. Here, individuals can learn more through our direct links to free resources such as reviews, opinions, and news throughout the Lancet online community.|
|Less Than Four (www.lessthanfour.org): Less Than Four is a unique on-line community for amputees to share information, resources, and stories of hope. It was founded by Josh Sundquist (www.joshsundquist.com), a former Special Love camper and counselor and a Paralympic skier.|
|The Leukemia and Lymphoma Society (www.leukemia-lymphoma.org): The Leukemia & Lymphoma Society’s mission is to cure leukemia, lymphoma, Hodgkin’s disease, and myeloma, and improve the quality of life of patients and their families. The Society has a web site at www.leukemia-lymphoma.org, and it contains educational materials, publications and some information on various patient services. It seems, however, the most effective way to tap into their connections and resources is to directly contact the local chapter, here in the DC Metro area at 703-960-1100.|
|Life with Cancer (http://www.lifewithcancer.org/resources.phpwww.lifewithcancer.org/resources.php), a part of Northern Virginia’s Inova Health System, is the region’s only community-based, nonprofit cancer support and education center, dedicated to helping patients and their loved ones learn about and cope with cancer and its treatments. Life with Cancer offers educational classes and consultations, an annual survivorship conference, support groups, individual and family counseling, and mind-body/wellness programs designed to help those affected by cancer understand and live with its impact. All services are provided by certified oncology nurses and licensed clinical social workers and are offered entirely free of charge, thanks to generous contributions by individuals, foundations and corporate donors.|
|Lymphoma Research Foundation of America (www.lymphoma.org): The mission of the Lymphoma Research Foundation (LRF) is to eradicate lymphoma and serve those touched by the disease. The foundation is the nation’s largest lymphoma-focused voluntary health organization devoted exclusively to funding lymphoma research and providing patients and healthcare professionals with critical information on the disease. To date, LRF has funded more than $18 million in lymphoma research. People with cancer can receive free personalized information tailored to their diagnosis, help with finding a clinical trial, emotional support, financial assistance, and easy-to-understand information on lymphoma, current treatments, and promising research. Please call 800-500-9976, email firstname.lastname@example.org, or visit the website www.lymphoma.org.|
|The Make-A-Wish Foundation (midatlantic.wish.org): The Make-A-Wish Foundation grants wishes to children under the age of 18 with life-threatening illnesses. It is the largest wish-granting organization in the world with 80 chapters in the United Stated and its territories, and 20 international affiliates. If you’d like to know more about The Make-A-Wish Foundation including how to refer your child or a child you know for a wish, call 800-722-WISH or visit their web site at www.wish.org. There are also regional chapters for specific regional information and contacts. The phone number for the Mid-Atlantic Region is 301-962-9474.|
|Mouths made good (www.mouthsmadegood.com) is for anyone who wants to know more about oral mucositis. Maybe you’re a friend, brother, sister, mother or father of someone going through chemotherapy or radiation? Or perhaps you’re a patient yourself? However you are connected, here you can find out more about oral mucositis and the ways you can help tackle it. You might even come across a reason to smile along the way.|
|National Brain Tumor Foundation (www.braintumor.org): NBTF is a national not-for-profit health organization dedicated to providing information and support for brain tumor patients, family members, and healthcare professionals, while supporting innovative research into better treatment options and a cure for brain tumors. The NBTF has a great web site at www.braintumor.org. This site’s goal is to provide objective information regarding treatment options and community resources so patients and families can make decisions best for them, provide opportunities to connect with other patients, families and providers, and provide hope to all effected by this disease. Although not geared specifically for pediatric cancer, it’s packed with resources, chat rooms, and valuable links. This organization may also be contacted by phone at 1-800-934-CURE.|
|The National Children’s Cancer Society (www.children-cancer.com): The mission of The National Children’s Cancer is to improve the quality of life for children with cancer and to reduce the risk of cancer by promoting children’s health through financial and in-kind assistance, advocacy, support services, education and prevention programs. The NCCS runs a program called the Pediatric Oncology Program or POP. The goal of POP is to help families who have a child with cancer. The program offers financial assistance, emotional support and advocacy. For more information call 1-800-532-6459 or visit www.children-cancer.com. This web site also contains stories, many valuable resources, and links.|
|National Coalition for Cancer Survivorship (www.cansearch.org): The National Coalition for Cancer Survivorship is a volunteer group concerned by issues faced by people with cancer and people who have recovered from cancer. Their website, www.cansearch.org, details public health and policy issues, conferences and events, and media alerts. Provides survivors and patients with a step-by-step guide to the cancer resources found on the web. The NCCS can also be reached by phone at 1-877-NCCS-YES (1-877-622-7937) or (301) 585-2616.|
|National Father’s Network (www.fathersnetwork.org): The mission of this web site is to celebrate and support fathers and families raising children with special health care needs and developmental disabilities. The site contains various articles, photographs and bulletin boards.|
|Oncology by OncologyStatA 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.|
|Patient-Centered Guides (www.patientcenters.com): When your life is turned upside down, your need for information is great. You have to make critical medical decisions, often with what seems little to go on. Plus you have to break the news to family, quiet your own fears, cope with side effects, figure out how you’re going to pay for things, and sometimes still get to work and get dinner on the table. Patient-Centered Guides are a mix of medical, practical and emotional information, grounded in Western medicine, told by people who have been there.|
|Pediatric Oncology Resource Center (www.acor.org/ped-onc/): The Pediatric Oncology Resource Center is a place for parents, friends, and families of children who have or had childhood cancer. This site was created by and for people who know young people who are recovering from cancer. It’s a gathering of resources, Web links, and references and store our information and tidbits of knowledge.|
|Shared Experience (www.sharedexperience.org): A collection of first-hand accounts of the cancer experience, along with great links and resources for researching your particular type of cancer and side effects of specific drugs. A “must” site for newly diagnosed families, it is also very low-tech, so it is suitable for even the slowest dial-up internet connection.|
|VideoJug offers how-to videos on just about everything, including coping with cancer. While their cancer videos are geared more toward adult cancers, the coping tips are applicable to anyone.|
|Merchandise/Services for Sale|
Award-Winning Software for Leukemia & Solid Tumor Patients
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.
|The BeauBeau (www.4women.com): a fun, fashionable, and comfortable alternative to wearing a wig. Beautiful and unusual fabrics for women and children! Lots of styling options!!|
|Care.com (http://www.care.com): Care.com is the largest online community of caregivers. With thousands of specialized babysitters and nannies located all over the U.S., families and individuals are sure to find a perfect match for their children. Use promo code CARE10 to receive 10% off Care.com.|
|Komfy Kids (www.komfykids.com): Komfy Kids are therapeutic dolls that have been designed to assist in the psychological well-being of children with hair loss due to cancer, alopecia, or otherwise. Komfy Kids are huggable, loveable, and most of all, they are your child’s best friend. A portion of sales benefits the I’m a Kid Foundation (see above link).|
|Madcapz (www.madcapz.net) are a colorful, unique alternative to boring ball caps!|
|Nammu (http://www.nammuhats.com/ ) is a stylish sun protective swim cap designed to protect the head from the sun while in and around water. Fashioned like a trendy bandanna, Nammu is fitted swim cap that stays in place during any activity. Nammu is affordable, fashionable and functional. Please type “ Special Love ” in the special instructions box at the checkout.|
|Support Groups & Bereavement|
|Cancer Care (http://www.cancercare.org): The Cancer Care Counseling Line, 1-800-813-HOPE provides telephonic counseling services for people with cancer and their families. Additionally, they hold telephonic support groups (adolescents only, no children) and teleconference programs (geared toward adults) on cancer related issues. For additional information on these services, call the Counseling Line or visit www.cancercare.org.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.
|Cancer & Bereavement Camps|
|Camp Sunshine (http://www.campsunshine.org): Camp Sunshine’s mission is to provide children with life threatening illnesses and their families support and resources. Located in beautiful South Casco, Maine, the camp offers week long programs with professional counseling, workshops, recreational opportunities, and onsite medical support for children and their families at no charge. Camp Sunshine has the distinction of being the only program in the nation whose mission is to address the impact of a critical illness on every member of the immediate family-the ill child, the parents, and the siblings. Families have an opportunity to rebuild their relationships together and meet other families facing similar challenges. This is a great place for some much needed rest, relaxation and family time. Although there are limited spots available each year, it’s worth looking into. For more information see www.campsunshine.org or call 207-655-3800.COCA International (http://www.cocai.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.|
|Comprehensive Cancer Care Organizations|
|The National Cancer Institute (NCI) (www.cancer.gov/) is the Nation’s primary agency for cancer research. It leads the nation’s fight against cancer by supporting and conducting research in cancer biology, causation, prevention, detection, treatment, and survivorship. The NCI also supports cancer centers, community-based clinical oncology programs, education, and outreach programs.|
|The American Cancer Society (ACS) (www.cancer.org/) is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives and diminishing suffering from cancer through research, education, advocacy, and service. The ACS maintains a toll-free information hotline (number listed above) available 24 hours a day, seven days a week. The ACS, Mid-Atlantic Division’s toll-free number, 1-888-ACS-NEED, connects you with one of two local field Resource Centers who can provide comprehensive and current information about ACS programs and services, as well as community resources and information.www.integrativetherapiesprogram.org|
|The Patient Resource Cancer Guide (http://www.patientresource.net/) is a comprehensive source for information, including cancer background, survivor stories, and a host of links to cancer-specific resources.|
|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/
|Dealing with Financial Issues and Insurance
Patient Advocate Foundation (http://www.patientadvocate.org): The Patient Advocate Foundation is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job discrimination and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability. Their web site, at www.patientadvocate.org, contains a variety of resources and links to other sites that might be of assistance in understanding insurance and managing financial difficulties brought on by costly care. There is also information on the Children’s Health Insurance Plan (CHIP) for which your child might qualify. To contact them by phone for help, call 1-800-532-5274.
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.”|
|Home Care & Hospice|
|American College of Physicians Home Care Guide for Advanced Cancer (http://www.acponline.org/patients_families/end_of_life_issues/cancer/): This web site, www.acponline.org/public/h_care/index.html, is an invaluable tool for caregivers, family, friends and professionals alike. It provides practical information on managing symptoms and pain, when to call the physician, how to care for yourself as the caregiver and handling death. There’s also a dedicated area for managing children’s issues.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.
HomeHealthCareAgencies.com (http://www.homehealthcareagencies.com/) provides listings and information on companies who offer a wide range of skilled medical services such as nursing care, physical therapy and occupational therapy from qualified medical professionals in addition to various services from home health aides. Other home care companies might offer assistance with daily activities, such as bathing and eating. Home care services are conducted in the comfort of your home.
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
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.
|Books & Videos for Kids|
|I Never Signed up for This, by Katie Strumpf (a former Special Love camper) is a must-read for grade school and adolescent children who are facing a cancer battle. It gives no-nonsense advice from a kid’s perspective and offers hope through self-advocacy and friendship.|
|Kathy’s Hats: A Story of Hope, by Trudy Krisher. Albert Whitman and Company, 1992. A little girl loses her hair as a result of treatment for cancer, and she learns that the most important thing about a person is the way she thinks about things.|
|Someday Heaven, by Larry Libby. Multnomah Publishers, Inc. September 1999. This is a book for children on heaven from a biblical perspective. Provides clear explanations, but with room for varied beliefs.|
|Waterbugs and Dragonflies, by Doris Stickney. Cleveland: The Pilgrim Press, 1982. This is a delightful fable inspired by the author’s need to explain the death of her child’s friend.|
|Annie Loses Her Leg but Finds Her Way, by By Sandra J. Philipson, Robert Takatch. Greenleaf Enterprises, 1999. A dog loses her leg to cancer but recovers and teaches kids that you don’t have to be perfect to be happy and live a great life.|
|My Book for Kids with Cansur, by Jason Gaes. Publishers West Group. An autobiography of a young boy who got sick and was cured. Tells of his journey from diagnosis, through treatments and to remission.|
|Charlotte’s Web, by E.B. White. New York: Harper and Row, 1952. A classic book for all ages for addressing the idea of life cycles.|
|The Fall of Freddie the Leaf, by Leo Buscaglia. New York: Henry Holt and Company, 1982. A story of the life cycle for all ages that is timeless.|
|The Tenth Good Thing about Barney, by Judith Viorst. Boston: Atheneum, 1971. For children in mid-elementary grades. A boy learns about life cycles when his cat dies.|
|The Jester Has Lost His Jingle, by David Saltzman. David wrote this absolutely charming tale after being diagnosed with Hodgkin’s Disease. It’s about smiling, laughter and hope. He died of the disease in 1990, just before his 23rd birthday.|
|Lifetimes, by Brian Mellonie and Robert Ingpen. New York: Bantam Books, 1983. Good book to teach small children about death. Great illustrations and easy to understand.|
|Books & Videos for Teens|
|“Straight Talk about Death for Teens” by Earl A Grollman. Boston: Beacon Press, 1993. Directly addresses issues teen face from the first day on.|
|A Special Kind of Courage, by Geraldo Rivera. New York: Simon and Schuster, 1976. Collection of biographies of young people selected for their courage in the face of major life challenges.|
|Too Old to Cry, Too young to Die, compiled by Edith Pendleton. Nashville: Thomas Nelson Publishers, 1980. Three dozen teenagers share their experiences battling several forms of cancer. Practical tips included.|
|Books & Videos for Adults|
|VideosChildhood 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 http://www.danya.com/products_GrowingUp.aspwww.danya.com/products_GrowingUp.asp.|
|Books on CancerYoung People with Cancer. A Handbook for Parents. NIH/NCI|
|“Cancer with Joy” by Joy Huber, Morgan James Publishing, 2012. Resources and stories that will help newly-diagnosed family and their support givers find the joy in their journey with cancer. To order an autographed copy,|
|“Children with Cancer” by Jeanne Munn Bracken. New York: Oxford University Press, 1986|
|“Miracles of Courage: How Families Meet the Challenge of a Child’s Critical Illness” by Monica Dickens
New York: Dodd, Mead, 1985.
|“Amanda’s Gift” by Scott N. Maclellan. Health Awareness Communications, Inc., 1998. A review of the emotional and financial impact of a child’s cancer and other illnesses,on the family. A detailed summary of the health care system, the complexities of insurance companies and large hospital networks. Touches on all areas of life as a caregiver, including the impact on faith and marriage.|
|“Cancer and Self-Help : Bridging the Troubled Waters of Childhood Illness” by By Mark A. Chesler, Barbara K. Chesney . Univ of Wisconsin Press, 1995|
|“Childhood Cancer: A Parent’s Guide to Solid Tumor Cancers” by Honna Janes-Hodder, Nancy Keene, Honna Janes Hodder. O’Reilly & Associates, 1999. A complete parent guide that includes detailed medical information about solid tumor childhood cancers, including neuroblastoma, Wilms tumor, liver tumors, soft tissue sarcomas, and bone sarcomas. Day-to-day practical advice also covered.|
|“Childhood Leukemia : A Guide for Families, Friends &Caregivers” by Nancy Keene. O’Reilly & Associates; 1997. A comprehensive parent guide which covers medical information about leukemia and the various treatment options. Practical advice on how to cope with procedures, hospitalization, family and friends, school, social and financial issues, communication, and, if therapy is not successful, the difficult issues of death and bereavement.|
|“Fighting Chance: Journeys Through Childhood Cancer” by Harry Connolly, Tom Clancy, Curt I. Civin Woodholm House Pub, 1998; Containing 200 images, this book follows courageous patients, strong families, and brilliant caregivers battling cancer in and out of the hospital.|
|“Caregivers Handbook, A Complete Guide to Home Health Care” put out by the Visiting Nurses Association. A comprehensive guide on how to care for the sick at home, including how-to’s with pictures.|
|“Surviving Childhood Cancer”, A Guide for Families” by Margot Fromer. A very practical and useful guide containing information such as handling school, siblings, financial issues and the like. Inspirational stories are also tossed in throughout.|
|Books on Bereavement|
|“Remember Me” is a tangible tool that works with story telling, pictures and memories. It allows one to introduce conversation with a child so they can express their feelings. It encourages children to find comfort in imagining their loved one around them, everyday, and uses words that children can understand and relate to, thereby helping them during their time of grief. Click http://www.seenapublicationsandproductions.com/childrensbooks/index.phphere for info.|
|“Getting Beyond Tragedy” is the straightforward, inspiring story of how one family experienced, endured and continues moving beyond a tragedy—the passing of the youngest of three children, a son who died of leukemia. Click here for more info.|
|“From Erin With Love: Knowledge of Life After Death” by Helen M. Fisher. Swallowtail Pub, 1996. Book about her daughters fight for life and the courage of both a mother and daughter during her illness and beyond.|
|“The Bereaved Parent” by Harriet Sarnoff Schiff. New York: Crown Publishers, 1977. Wise counsel addressing how to go on with your life after the death of a child.|
|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.”|