Pediatric Cancer Sites
National Cancer Institute
The National Cancer Institute (NCI) is a component of the National Institutes of Health (NIH). It is the Federal Government's principle agency for cancer research and training. An older version of the NCI site was re-vamped into "cancer.gov" in early 2002 and the site is very good. (Although as of 4/02, childhood cancers are still listed under 'types of cancers' - 'cancers by body location/system' - 'childhood cancers'.)
2008: NCI cancer bulletin on pediatric oncology. A wealth of information on the different cancers, their treatment, and survivorship issues.
What the site has to offer:
- PDQ (Physician's Data Query) information for each type of cancer. "PDQ" is a comprehensive cancer database which contains peer-reviewed statements on disease descriptions, treatment, supportive care, clinical trials, etc. Whenever you run across a statement with NCI PDQ next to it, you are assured it is peer-reviewed, up-to-date information.
- Clinical trials information, and directions on how to use the information.
- Clinical trial search forms, plus links to other clinical trial web sites.
- Cancer statistics.
- Cancer related news.
- CANCERLIT database.
National Children's Cancer Society
One South Memorial Drive, Suite 800 St. Louis, MO 63102
phone: 314-241-1600 fax: 314-241-1996
Website: http://www.nationalchildrenscancersociety.org/Page.aspx
The mission of The National Children's Cancer Society is to improve the quality of life for children with cancer and their families worldwide.
We serve as a financial, emotional and educational resource for those in need at every stage of illness and recovery. In the United States, we ease the financial burdens that accompany major illness, give crucial support and address the challenges of survivorship. Abroad, we provide lifesaving pharmaceutical drugs and medical supplies to facilities that treat children with cancer.
CureSearch
Complete coverage of all aspects of childhood cancer from the Children's Oncology Group. A must-see and must-bookmark site.
Candlelighters
US National and Canada
The Candlelighters Childhood Cancer Foundation® (US-CCCF) was founded in 1970 by concerned parents of children with cancer. Today their membership of over 43,000 includes:
- Parents of children who are being treated, or have been treated for cancer
- Children with cancer
- Survivors of childhood cancer
- Immediate or extended family members
- Bereaved families
- Health care professionals
- Educators
Childhood Cancer Guides
Excellent resources for parents of children with cancer. Content is from the books on childhood cancer and leukemi co-authored by Nancy Keene. This site has just about everything.
National Academies Press
Making Better Drugs for Children With Cancer.
2005. National Academies Press offers this book either for sale or for free page-by-page online viewing. A good discussion of the issues of drug developments for childhood cancer.
Cancer Legal Resource Center
Children and Cancer resources from the Cancer Legal Resource Center
Info: https://www.disabilityrightslegalcenter.org/about/documents/NationalChildrenandCancer2011.pdf
Squirrel Tales
The Never Ending Squirrel Tale is a wonderful, homey site by the friend of a mom of a young girl who has cancer.
What the site has to offer:
- Personal stories and ideas to help parents cope with their child's cancer
- A newsletter of good ideas for cancer parents
- Links to resources
Bandaides and Blackboards
This site is about growing up with medical problems. Although not childhood cancer specific, this is a friendly and useful site.
CureOurChildren
CureOurChildren is a site authored by a parent of a Ewings patient. This site has excellent original information. Notable: What to do at the time of initial diagnosis, new drugs and treatments for Ewing's Sarcoma, mouthsores, preparing your home for the chemotherapy patient, Take My Hand Project (direct assistance program), special education and disability resources, how to get drugs that are not FDA approved yet, and more.
St. Jude's Children's Hospital
St. Jude Children's Research Hospital is known throughout the world for its clinical and scientific contributions to the fight against catastrophic childhood diseases. The site offers information on its latest research results.
M. D. Anderson Cancer Center
M. D. Anderson Cancer Center, Children
M. D. Anderson offers an experienced team of specialists and innovative technologies and treatments for pediatric cancers. They offer clinical trials sponsored both by COG and by their own institution. The web site offers good information on the different childhood cancers and their treatment.
ACOR
ACOR has hosted the Pediatric Oncology Resource Center since 1998, and mailing lists several years before that. By 2002, ACOR itself was re-vamped to include:
- Types of cancers (disease descriptions maintained by NCI)
- Treatment options
- Clinical trials
- Cancer bibliography (books and NCI cancer facts)
- MedLine searches directly from ACOR (click on "Publications" on the main ACOR page)
- Dictionary
Home Care Guide
This site is information only, no links. It is well-written, a practical guide with information on fevers, loss of appetite, mouth problems, nausea, hair loss, school, etc. It is written by Ph D's and MD's, associated with the University of Pennsylvania.
CancerGuide
Steve Dunns' cancer guide. Do not miss this site; sometime when you are Internet researching, allow yourself time to explore this site. The site has no graphics, focusing instead on straightforward information.
- Information and guidance on clinical trials.
- Unconventional treatment.
- Starting point for clinical trial research.
- Discussion of alternative treatments. A link to the "Quack Watch" site.
- Inspiration, straightforward and wonderful.
National Library of Medicine
A great entry page to MedLine, Clinicaltrials.gov, directory of health organizations, LocatorPlus (catalogue of books, journals, and audiovisuals in the NLM collection), NLM gateway, PubMed, ToxNet, and more.
MedLine Plus
On the National Library of Medicine site (see above), sponsored by NIH.
- Health topics
- Drug information
- Dictionary
- Directories
Dana Farber Cancer Institute
The pediatric cancer section of the Dana Farber Cancer Institute site is well-organized and easy to navigate. Most of the disease information is from NCI (the same as on the cancer.gov site). The site features personal profile stories, information on research in progress at Dana Farber, a link to the Perini Clinic (survivors' program), some helpful information on cancer family issues, and information about the clinic.
Cancer Care
CancerCare provides well-written information on pediatric cancers, including:
- When a child has cancer
- Detection and diagnosis
- Types of childhood cancers and how they are treated
- Pediatric Clinical Trials
- Treatment side effects
- End-of-life and bereavement issues
The pediatric section draws on the resources of the entire CancerCare site. CancerCare is a national non-profit organization whose mission is to provide free professional help to people with all cancers through counseling, education, information and referral and direct financial assistance.
Amercan Society of Clinical Oncology (ASCO)
The latest in clinical research results are presented at the annual meetings of ASCO. The link above takes you to the "browse by meeting" so that you can look up abstracts related to the childhood cancer that you are interested in.
Akron Children's Hospital Childhood Cancer Center
The pediatric oncology division of Akron Children's Hospital offers highly specialized teams to care for children and teens who have cancer. The web site offers a lot of information on the different cancers and treatment issues in the form of lay articles. The site is especially easy to navigate.
Seattle Cancer Care Alliance
The Seattle Cancer Care Alliance is the combined cancer programs of the Fred Hutchinson Cancer Research Center, UW Medicine, and Children's Hospital and Regional Medical Center. "We are the Pacific Northwest leader in the treatment of childhood cancers." The site has decent sections on cancer descriptions and treatment; even better are the descriptions of the different types of transplants.
OncoLink: A University of Pennsylvania Cancer Center Resource
For childhood cancers, go to "cancers", then "pediatric". Most of the disease information on the Oncolink site really resides on the NCI site (cancer.gov), but there are some good resources on Oncolink itself if you look around. The Library has a journal scan, the Coping with Cancer section has articles on dealing with side effects and links to financial helps, the Radiation Oncology section contains good, original information.
Health Canada
"This Battle Which I Must Fight: Cancer in Canada's Children and Teenagers." This is the lead-in statement on the childhood cancer portion of this site. Health Canada contains an abundance of well-written information on childhood caners.
What this site has to offer:
- Descriptions of childhood cancers and treatments.
- Discussions of emotional issues.
- Discussions of unconventional treatments.
- Excellent writings by teens and youngsters with cancer, nicely presented.
- Statistics, discussions of causes.
JLS Foundation
Although based on leukemia, this page has information relevant to issues of parents of all childhood cancers. BMTs, nutrition, supportive therapies, chemo drugs' effects, and other similar topics are discussed. There is some good, original information on this site.
Children's Cancer Web: A Guide to Internet Resources for Childhood Cancer
This guide aims to provide an overview of Internet resources for childhood cancer and to provide hyper-links to some of the key cancer-related web pages. This is an index site and as such offers little information in its own right; it has been produced with the aim of making it easier for the user to find more specific information quickly. It is mainly the work of an English gentleman named Simon, who has developed the database largely in his personal time.
What the site has to offer:
- Links. But not just links, links, an extremely comprehensive database which is accurate and updated frequently.
Hope Street Kids
A listing of web sites, publications and organizations for parents of kids with cancer. Another web site that is links to other sites rather than original information, but it is worth a visit because, like Children's Cancer Web, they they keep a good compilation of links.
Memorial Sloan-Kettering Cancer Center
Memorial Sloan-Kettering Cancer Center
The pediatric section of the MSKCC was added to the main site 6/01. It contains information about individual pediatric cancers and bone marrow transplantation, but more importantly, perhaps, it lists ongoing pediatric clinical trials and various treatments available at Memorial Sloan-Kettering Cancer Center's Pediatric Cancer Care. Families can find out how to make an appointment at the hospital, and what to expect when they get here. Note: 7/03, the site continues to grow. Be sure to check out the disease-specific areas for cancer informaiton and also for new treatments offered by MSKCC.
Children's Brain Tumor Foundation (CBTF)
Address: Suite 1004 274 Madison Avenue New York, NY 10016
Telephone: 212-448-9494 (Responds to calls in English and Spanish)
1-866-228-4673 (1-866-228-HOPE) (Responds to calls in English and Spanish)
E-mail: info@cbtf.org Web site: http://www.cbtf.org
The Children's Brain Tumor Foundation (CBTF) is a nonprofit organization whose mission is to improve the treatment, quality of life, and long term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy for families and survivors.
CBTF has a free publication, A Resource Guide for Parents of Children with Brain and Spinal Cord Tumors, and also co-sponsors conferences, teleconferences, and webinars for families, survivors, and health care professionals. CBTF offers a toll-free support line where you may speak with pediatric neuro-oncology social workers. CBTF's Family 2 Family Network allows families to share their experiences with those having similar concerns. CBTF also hosts and sponsors events, such as the Kids Cruise or Brain Tumor Week at Camp Sunshine, which offer families fun while building relationships within the community. CBTF funds research to identify the causes of brain tumors in children and to find effective treatments.
Additional Resources: A Resource Guide for Parents of Children with Brain and Spinal Cord Tumors
http://www.cbtf.org/sites/default/files/wysiwyg/4th_edition_RG_final.pdf
The Tomorrow Fund, Helping Children with Cancer
In 1985, a group of local citizens formed The Tomorrow Fund to help children with cancer in Rhode Island and surrounding areas who come to the Rhode Island Hospital for treatment. The six founders included physicians, teachers, child development experts, and parents of children with cancer. As of June 1998, the site is still growing, so keep an eye on this one! It has a pleasant, friendly interface.
What the site has to offer:
- Links to information
- Stories of and by children with cancer
- Chat rooms
- Activities for kids
Children's Hospice International (CHI)
Address: Suite 360 1101 King Street Alexandria, VA 22314
Telephone: 703-684-0330 (Responds to calls in English only)
E-mail: info@chionline.org Web site: http://www.chionline.org
Children's Hospice International® (CHI) is a nonprofit organization that provides education, training, and technical assistance to those who care for children with life-threatening conditions and their families. CHI has publications devoted to home care, palliative pain and symptom management, the development of hospice care services, and related subjects. CHI also has a resource directory with information on over 1,500 programs devoted to the care of children with life-threatening conditions.
CHI, with technical assistance from the Centers for Medicare & Medicaid Services (CMS), developed the Children's Hospice International Program for All-Inclusive Care for Children and their Families® (CHI PACC®). The CHI PACC program provides a continuum of care for children and their families from time of diagnosis, with hope for a cure, through bereavement if a cure is not attained. To learn more about the CHI PACC program and services in various states, visit the link in the Additional Resources section.
Starlight Children's Foundation
Address: Suite M100 5757 Wilshire Boulevard Los Angeles, CA 90036
Telephone: 310-479-1212 (Responds to calls in English and Spanish)
1-800-315-2580 (Responds to calls in English and Spanish)
E-mail: info@starlight.org Web site: http://www.starlight.org
Starlight™ Children's Foundation is a nonprofit organization dedicated to helping seriously ill children and their families cope with their pain, fear, and isolation through entertainment, education, and family activities. Starlight builds playrooms and teen lounges in hospitals, and provides PC Pals and Fun Centers for kids to play games, e-mail, and chat with friends. Entertainers and parties are provided for children in the hospital. Starbright World is an online social network where teens (ages 13 to 20) who have serious medical conditions, and siblings of seriously ill teens, can connect with each other via moderated chat rooms, games, bulletin boards, videos, and more. Chapters are located in many U.S. states and in other countries.
Additional Resources:
Starlight Local and International Chapters: http://www.starlight.org/locations/
Search for Starlight Programs: http://www.starlight.org/programs/
Starlight 365: Official Blog (interactive noline com: http://www.millionstars.org/blog.aspx
Starbright World (Online Social Network for Teens): http://www.starbrightworld.org
Medicine OnLine
Medicine OnLine is a health information service published by Ultitech and financed by Glaxo Wellcome and Pharmacia & Upjohn. Focuses on adult cancers.
What the site has to offer:
- Information library on leukemia. (Other cancers not available at the time of this writing; the leukemia section focuses on adult leukemia.)
- Oncology news.
- Cancer forums and links.
- DoseCalc OnLine. Some information about chemotherapy drugs, as in information on doses and regimens, and comparison of brand and generic names.
American Cancer Society
"Knowledge is power. For the cancer patient, knowledge means the power to understand your specific disease and the best treatment options available." This is a direct quote from one of the ACS pages, and as a mission statement, it is reflected throughout the site. This site has pages and pages of text written to help the cancer patient of all ages. It also offers practical support ideas and contacts for family members.
What the site has to offer:
- Cancer news and research progress.
- Prevention and detection strategies.
- Descriptions of many specific cancers and their treatment. At the time of this writing, they have sections on lymphomas, Wilms, and bone cancers. This part of the site is growing, so check back. When they do write about a cancer, it is very well-written, thorough, and original.
- Fundraising information.
- Services and help for the cancer patient; a directory of local chapters.
Books4Doctors
An excellent resource (I link to this from the book page too): "Free Medical Books - Over the next few years, many important medical textbooks will be available online, free and in full-text. The unrestricted access to scientific knowledge will have a major impact on medical practice. FreeBooks4Doctors! is dedicated to the promotion of free access to medical books over the Internet."
Address: Suite 1004 274 Madison Avenue New York, NY 10016
Telephone: 212-448-9494 (Responds to calls in English and Spanish)
1-866-228-4673 (1-866-228-HOPE) (Responds to calls in English and Spanish)
E-mail: info@cbtf.org
Web site: http://www.cbtf.org
The Children's Brain Tumor Foundation (CBTF) is a nonprofit organization whose mission is to improve the treatment, quality of life, and long term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy for families and survivors.
CBTF has a free publication, A Resource Guide for Parents of Children with Brain and Spinal Cord Tumors, and also co-sponsors conferences, teleconferences, and webinars for families, survivors, and health care professionals. CBTF offers a toll-free support line where you may speak with pediatric neuro-oncology social workers. CBTF's Family 2 Family Network allows families to share their experiences with those having similar concerns. CBTF also hosts and sponsors events, such as the Kids Cruise or Brain Tumor Week at Camp Sunshine, which offer families fun while building relationships within the community. CBTF funds research to identify the causes of brain tumors in children and to find effective treatments.
Additional Resources:
A Resource Guide for Parents of Children with Brain and Spinal Cord Tumors
http://www.cbtf.org/sites/default/files/wysiwyg/4th_edition_RG_final.pdf
