Pediatric Oncology Resource Center
Pediatric Oncology Resource Center has information on the signs and symptoms of childhood cancer, explanations of some of the diagnostic tests and treatments that kids undergo, and best of all, lots of pictures of cancer kids and their families. A great place to send concerned family members right after diagnosis to help them understand what you and your child are going through.
Childhood Cancers: Diagnoses and Treatments
Childhood Cancers: Diagnoses and Treatments allows you to look up any childhood cancer diagnosis in the National Cancer Institute’s “PDQs” with information on all types of childhood cancers, along with information on how they are diagnosed, staged and treated.
Young People With Cancer: A Handbook for Parents
An online version of a handbook put out by the National Cancer Institute, it “discusses the most common types of childhood cancer, treatments and side effects, and issues that may arise when a child is diagnosed with cancer. Offers medical information and practical tips gathered from parents.”
Making Cancer Less Painful: A Handbook For Parents
From the Centre for Pediatric Pain Research in Canada. Concrete information on the types of pain children face from cancer and cancer treatment, and practical steps to allieviate it.
CureSearch is an organization that primarily raises funds for innovative cures for childhood cancer. They also have a web site with information about the diagnosis and treatment of childhood cancers.
Childhood Cancer Guides
Includes links to a variety of resources on childhood cancer and survivorship issues. Also has information about The Childhood Cancer Guides, the best books for parents and other lay people on childhood cancer. These excellent titles include Nancy Keene’s book, “Childhood Leukemia: A Guide for Families, Friends and Caregivers,” Anne Spurgeon and Nancy Keene’s “Childhood Solid Tumors” and Tania Shiminski-Maher, Patsy Cullen and Maria Sansalone’s Childhood Brain and Spinal Cord Tumors.
Five Ways to Support Families Dealing With Childood Cancer
An article from a Dana Farber Cancer Center parent with practical ideas for what family, friends and neighbors can do to help a family with a child on treatment for cancer. Lots of great insights from other parents in the comment section, too.
American Childhood Cancer Organization
American Childhood Cancer Organization (formerly Candlelighters) is a national support organization for families of children with cancer. At their web site, you can search to see if there’s a local chapter near you, post a question to the message boards or order some of their excellent resource materials to serve as a guide through the childhood cancer experience for you and your child.
Steve Dunn’s Cancer Guide
This is a comprehensive, thoughtful site put together by a cancer survivor. The site links you to an amazing variety of general cancer resources on the web, and looks at some of the “big picture” issues involved in battling cancer, like whether to get involved in a clinical trial and how to gain perspective when the doctor gives you lousy odds.
The U. S. National Library of Medicine offers FREE Medline searches. Use the MedlinePlus search engine to get the latest information on any area of medical research.
The Never Ending Squirrel Tale
The Squirrel Tales Childhood Cancer web site has survivor stories, tips and suggestions from parents and kids and an excellent page of links to BMT resources, support services, etc. Scan this always growing web site for lots of other information as well..
The Pediatric Hematology/Oncology Home Care Guide
Penn State University offers parents practical information on caring for the medical and physical needs of kids in cancer treatment. This opens as a pdf document that you can save to your hard drive, or just read on the screen. Very handy when you’re just starting out in this new world of IV medicines, venous catheters, infections, nausea, mouth sores, etc. or when you have a question and the clinic nurse won’t be in until Monday.
Pediatric Oncology (PED-ONC) mailing list subscription site
You may subscribe to the PED-ONC internet mailing list at this site, or you may join other mailing lists which center on a variety of cancer related topics. For instance, there is a PED-ALL list, the N-BLASTOMA (neuroblastoma) mailing list and a RHABDO-KIDS list. You can also make changes to an existing subscription or search the archives of previous posts. The list is run by a dedicated group of hard-working volunteer administrators, and most of the list members are parents of children with cancer you can share information and ideas with. The mailing lists generate a lot of mail, so look out! Many people find that it is well worth the deluge of mail, because mailing lists are a great way to interact with other parents of kids with cancer. Once you’ve subscribed and have a sense of the flow of the correspondence, you can jump in and ask practical care questions, get support and share joys and difficulties with other people around the world who understand what you’re going through and who speak the same strange medical lingo. Read the subscription information carefully, so that your contributions will follow the posting guidelines. Good news–no commercial posts (spam) allowed! Hosted by the Association of Cancer Online Groups, known as ACOR.
Make A Wish Foundation
Make-A-Wish is the oldest and largest of the organizations which grant wishes to children facing life-threatening illnesses. Click the link for contact information on your local chapter.
Interpersonal Support Websites
You can create your own web page for your child! The Caring Bridge web site is a FREE service allowing anyone receiving medical care to communicate with family and friends using your own web page. You can post photos and updates, and read messages from your friends and family.
Lotsa Helping Hands
Those who care about you and your child may find this free site very helpful because it allows them to set up and maintain a private calendar to organize assistance for your family. Simple tasks like getting the lawn mowed, walking the dog or making dinner may be a lot harder to accomplish when your child is getting frequent tests and treatments. If someone offers to rally practical help for your family, encourage them to try Lotsahelpinghands.com.