ABTA Kids is a special section of the American Brain Tumor Association's Web site that is written and designed specifically for children. The colorful pages and images present a wealth of information in a visually appealing manner attractive to children of all ages.
There are four main sections: learning, sharing, activities, and volunteer. The learning section presents facts and statistics, frequently asked questions, and a link to a book called Alex's Journey that you can download for free. The sharing section presents the personal accounts of a variety of children of different ages regarding their experiences with various types of brain tumors. The activities section offers crossword puzzles and other interactive games that are geared to helping you learn more about brain tumors. Finally, the volunteer section offers information for children who are interested in volunteering for the ABTA.
Back to School: Washington University Department of Pediatrics
Back to School -- A Web resource from Washington University's Department of Pediatrics -- presents information regarding children returning to school after having being diagnosed and/or treated with cancer. There are checklists for parents, tips for teachers, and detailed information on the effects of cancer therapy. In addition, this site provides tools and resources for planning for a child's return to the classroom.
Beyond the Cure was created for survivors of childhood cancer by The National Children's Cancer Society. This site provides a wealth of information about the late-effects of a cancer diagnosis and treatment pertaining to all areas of the survivors life. The Late Effects Assessment allows you to build an assessment of late-effects specific to your diagnosis and treatment. Creating a late effects assessment will allow you to develop a risk assessment of potential medical and educational late effects specific to your diagnosis and treatment.
Cancer.Net is a site providing onocologist-approved cancer information from the American Society of Clinical Oncology. This section of the site presents information to help teens who are coping with cancer. It offers sections pertaining to education, support groups, treatment, and how to deal with family, friends and school. There is also a section containing additional, external resources, such as information on camps and retreats, and a listing of educational scholarships available to teenagers with cancer.
Candlelighters Childhood Cancer Foundation is a national nonprofit organization that educates, supports, and advocates for children and adolescents with cancer, and their families.
In the "For Kids" section of this Web site, there are links to resources and information on other Web sites for children with cancer, teens with cancer, and siblings of cancer patients. These resources explain cancer in a way that is age-appropriate and offer information about coping with cancer. There is also a separate section with links to online cancer resources geared to parents' concerns. These include links to clinical trial information; advice on how to get financial assistance; tips on getting children to take their medicine; and information on bone marrow transplantation and cord blood donations. There is also a state-by-state location finder of Candlelighters support groups, and links to join age and disease-specific listservs (a group of people who communicate by e-mail).
Childhood Cancers (Cancer.gov) @ National Cancer Institute
The National Cancer Institute (NCI) provides comprehensive treatment information for more than 25 different childhood cancers, including those that are extremely rare. This information is gleaned from NCI's comprehensive cancer database, PDQ. It contains peer-reviewed summaries of the latest information about childhood cancer treatments, including an overview of each type of childhood cancer, symptoms, risk factors, diagnostic tests, and survival statistics. Information on treatment options is reviewed regularly by editorial boards comprised of cancer specialists, and changes are made as new information becomes available. Many of the summaries are also available in Spanish. The summaries are available in two formats -- for patients and for health professionals. The version for health professionals is more comprehensive and suited for those who are versed in cancer literature. This version provides detailed information on prognosis, staging, and treatment for each cancer type and refers to key citations in the medical literature that link to published abstracts.
This Web site provides excerpts from the book Childhood Leukemia: A Guide for Families, Friends & Caregivers, published in 2002. The excerpts cover such issues as your child's hospitalization, common behavioral and emotional changes in parents, drugs used to treat cancer pain, sibling stories, and ways to communicate with your child's physician. The book, which also can be ordered online, covers medical information about leukemia, treatment options, and practical advice to help parents cope. The Web site also lists organizations that provide information, emotional support, financial support, and other help to families who have a child with leukemia.
Childhood Leukemia Center: Practical Help for Parents
This site features an excerpted chapter from Childhood Leukemia: A Guide for Families, Friends, and Caregivers, which focuses on children with leukemia going back to school. Suggestions from Joanne Holt, a high school Director of Special Education, highlights different ways to help children keep up with their schoolwork.
The Childhood Leukemia Foundation helps to brighten the lives of children with cancer. The Foundation partners with pediatric cancer treatment centers and summer camps for young cancer patients to provide services, free of charge, to children and their families. These include custom-made wigs with kid-friendly hats, prepaid phone cards so that young patients and their families and friends can stay in touch if treatment involves traveling far away from home, and a summer camp experience.
Children's Hospital Boston's Interactive Parents' Guide to Medical Research
This Web site, funded by a grant from the National Institutes of Health, is designed to help parents gather the information they need to decide whether their child should participate in a medical research study.
Parents play a vital role in protecting their child's best interests and, for this reason, it can be especially hard for some parents to know whether a medical research study is appropriate for their child. This Web site can help parents (and legal guardians) separate the myths about medical research in children from the realities so that they can answer such questions as: What is medical research? How is research different from the treatment my child is receiving? What are the possible risks and benefits?
The Web site includes an interactive video presentation that explains both the basics of medical research and more detailed information about participation in medical research studies, such as the protections afforded to patients and the difference between standard and experimental therapies. You can also choose to read this information by clicking on the headings at the top of the screen.
The "Questions For Research Team" button allows you to prepare a customized list of questions to ask the research team. You can select from sample questions and/or create your own list of questions. When you are finished, you can choose to print, save, or e-mail your list of questions. The site's reference library includes a helpful list of FAQs and a glossary of terms related to medical research studies.
The CureSearch Web site was developed through the combined efforts of the Children's Oncology Group (COG), the world's largest cooperative childhood cancer research organization that treats more than 90 percent of US children, teens, and young adults with cancer, and the National Childhood Cancer Foundation (NCCF), a non-profit group that raises funds to support COG's research efforts.
This site offers valuable information about childhood cancer. Parents whose child is newly diagnosed may find the overviews of the different types of childhood cancers especially helpful. These overviews include information about causes, symptoms, and factors that affect the chances of a cure; most of the overviews are written by oncology (cancer) doctors or nurses. (Authors' names and hospital affiliation are indicated at the end of each overview.) The site does not indicate when the information was last updated.
Diagnostic Tests
There are descriptions, written in simple language, of the diagnostic tests used to determine whether a child has cancer, as well as tips to help prepare your child for such tests.
Practical Information
You will find tips on navigating the healthcare system and information about how a cancer diagnosis can affect families.
Treatment
If your child is getting ready to begin treatment or if treatment is already underway, you will find the In Treatment section helpful. It includes information about the different ways cancer is treated in children, the side effects of cancer treatment in children, complementary and alternative medicine treatments, and clinical trials.
After Treatment
For those whose treatment is ending, there is information about long term follow-up and healthy living after treatment.
Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers @ childrensoncologygroup.org
This site offers approximately fifty guidelines, in pdf format, which were developed as a collaborative effort of the Nursing Discipline and the Late Effects Committee as a resource for clinicians who provide ongoing healthcare to survivors of pediatric malignancies.
The Long-Term Follow-Up Guidelines cover such issues as potential late effects and risk factors for various chemotherapy and radiation treatments. There are also individual "Health Links" targeted to specific conditions, such as single kidney health, amputation, chronic pain, and emotional issues.
Although the information within the guidelines is valuable to the survivors, at this time the only version available is written for healthcare professionals. Therefore, survivors who choose to read these guidelines are advised to discuss this information with a qualified medical professional.
This Web site is a comprehensive guide to lymphoma in children. It covers both Hodgkin's Disease and non-Hodgkin's lymphoma. There's information about diagnosis and treatment and resources for more information. The site also includes links to kid friendly cancer-related Web sites and to mailing lists and online chats about lymphoma that area more geared to adult patients or parents whose children have lymphoma. Parents looking for books to guide them or their children through the cancer experience can find some recommendations that can be purchased online through Amazon.com. They may also find the Glossary of Lymphoma Terms to be helpful. This site is not hosted by a medical professional but rather, by a survivor. The author is not in the medical field and does not warrant the correctness of the material on the site, but rather advises you to consult with your own medical team to make informed decisions. At the bottom of each page, you can find the date the page was last updated.
Wilms Tumor is the most common type of kidney cancer among children. The National Wilms Tumor Study (NWTS) Web site is designed to support and inform survivors of this disease. The National Wilms Tumor Study Group was established in 1969 and during the course of five clinical trials, tumor mortality rates were cut in half.
Today the focus of the NWTS is on their Late Effects Study, the long term follow-up of survivors from the five clinical trials, and of their offspring. Its primary mission is to chart their mortality rates in comparison to those of the general population and to identify the particular treatments and biological risk factors that predispose survivors to late effects.
If you were diagnosed with Wilms tumor after September of 1969, you might have been enrolled on one of NWTS clinical trials and now be eligible for the Late Effects Study. If you would like to find out, you will find contact information on this Web site.
If you diagnosed before October of 1969 or after 2002, or were diagnosed within this period but not enrolled, NWTS still encourages you to contact them, as they aim to remain a resource for all Wilms Tumor patients by answering questions, sending copies of their newsletters, and using their resources to put you in contact with medical and counseling providers.
Penn State Pediatric Hematology/Oncology Home Care Guide
Health professionals now rely on family caregivers to provide support and encouragement to young people with cancer, and increasingly to also manage medications, help control symptoms and side effects, and report problems that require professional intervention. The Penn State Pediatric Hematology/Oncology Home Care Guide provides helpful guidance for the caregiver.
This guide has been written by cancer care professionals with help from home caregivers. There are twenty sections in all, broken down by specific problem areas, such as fever, constipation, mouth problems, bleeding, hair loss, going back to school, dealing with brothers and sisters, and depression. There is also a helpful fluid chart to determine the minimum amount of fluid your child needs to take every day during normal waking hours.
Note: The dropdown menu at the top of the Web site's main page is currently malfunctioning in Mozilla-based browsers (Firefox, Netscape 6).
Cancer is not only a life-changing experience for children with the disease but also for their siblings. Super Sibs reaches out to brothers and sisters of children with cancer, providing support so that they feel important and special, too. The organization serves children ages 4 - 18, at no cost, in the United States and Canada. Super Sibs provides booklets for siblings that acknowledge their feelings and recognize their important role, and age-appropriate journals where siblings can record their thoughts, concerns, and hopes. There's also a booklet for parents with tips to help support and include siblings, and siblings can enroll to receive a trophy and special medallions that recognize their strength and courage. Super Sibs also provides scholarships for graduating high school seniors who have a brother or sister that has been treated for cancer. Information is also available in Spanish.
