Childhood Leukemia

Online Support Groups

Be sure to check the accuracy of any medical information obtained from an online support group with members of your child’s treatment team.

The Association of Cancer Online Resources, Inc. (ACOR)

www.acor.org

ACOR is a unique collection of 142 online cancer communities that is designed to provide timely and accurate information in a supportive environment. It hosts several pediatric cancer discussion groups, including one for parents of children with ALL.

Facebook Support Groups

Numerous groups (most require permission to join) exist on Facebook to help families of kids with cancer. A few that were active at the time this book was written are listed below.

ALL: www.facebook.com/groups/5945722681
APL: www.facebook.com/groups/AcutePromyelocyticLeukemia
Bone Marrow & Stem Cell Transplant Patient Support: www.facebook.com/groups/5945722681
Children with CML: www.facebook.com/groups/207664421574
JMML: www.facebook.com/groups/jmmlsupport
Momcology: www.momcology.org/sitepage/support-groups

Imerman Angels

www.imermanangels.org

Imerman Angels offers one-on-one mentoring for adolescents and young adults with cancer.

Momcology

www.momcology.org

Momcology is an international online support group for mothers and other primary caregivers of children who have been diagnosed with cancer. Participants can request to join private Momcology Facebook support groups based on diagnosis, special care issues, or geographic region. A Facebook profile is needed to participate.

Stupid Cancer

www.stupidcancer.org

This is an online resource for and by adolescents and young adults with cancer. It includes medical information, links to scholarships and grants, regional and national conferences, a talk radio podcast, and an active peer support community, including a one-on-one peer support smartphone app.

About the Author

Nancy Keene is the mother of a long-term survivor of high-risk acute lymphoblastic leukemia. A well-known writer and advocate for children with cancer, she has written and co-authored many books on topics ranging from childhood cancers to working with your doctor. Her work has appeared in publications such as Reader’s Digest, Journal of the American Medical Association, Exceptional Parent, and Coping Magazine. She was the first chair of the Children’s Cancer Group (CCG) Patient Advocacy Committee, and then the first chair of the Patient Advocacy Committee of the Children’s Oncology Group (COG)—consortiums of researchers from more than 250 children’s hospitals. Nancy has been interviewed on National Public Radio (NPR), frequently speaks to professional and parent groups, and has participated in online support groups for parents of children with cancer since 1996. In her spare time, she likes to read, hike with her dogs, and kayak in the waters of the Pacific Northwest.

Childhood Cancer GuidesTM

Questions Answered
Experiences Shared

When your life is turned upside down, your need for information is great. You have to make critical medical decisions, often with what seems like little to go on. Plus, you have to break the news to family, quiet your own fears, help your ill child and your other children, figure out how you are going to pay the bills, and sometimes get to work or put dinner on the table.

Childhood Cancer Guides provide authoritative information for the families and friends of children with cancer or survivors of childhood cancer. Our books cover all aspects of how these illnesses affect family life. In each book, there’s a mix of:

Medical information
Dozens of experts on childhood cancer and survivorship contributed to these books to provide state-of-the-art information to help you weigh treatment options. Modern medicine has much to offer. When there are treatment controversies, we present differing points of view.
Practical information
After making treatment decisions, life focuses on coping with treatment and any side effects that develop. We cover day-to-day practicalities, such as those you’d hear from a helpful nurse or a knowledgeable support group.
Emotional support
It’s normal to have strong reactions to a condition that threatens your child’s life. It’s normal that the whole family is affected. We cover issues such as the shock of diagnosis, living with uncertainty, and communicating with loved ones.

Each book contains stories from parents, children, and siblings who share, in their own words, the lessons they have learned and what truly helped them cope.