Researchers are now studying the causes, diagnosis, supportive care, and treatment of leukemia at many medical centers, university hospitals, and other institutions.
Genetics
As noted in the section "Do we know what causes childhood leukemia?," scientists are making great progress in understanding how changes in DNA can cause bone marrow stem cells to develop into leukemia cells. Understanding the gene changes (such as translocations or extra chromosomes) that often occur in leukemia gives us insight into why these cells may grow out of control, and why they do not develop into normal, mature cells. Doctors are now looking to use these changes to help them determine a child's outlook and whether they should receive more or less intensive treatment.
This progress has already led to vastly improved and highly sensitive tests for detecting leukemia in blood or bone marrow samples. The polymerase chain reaction (PCR) test, for example, can identify very small numbers of leukemia cells based on their gene translocations or rearrangements. This test can find one tumor cell among a million normal cells. It is useful in determining how completely the leukemia has been destroyed by treatment, and whether a relapse will occur if further treatment is not given.
Clinical trials
Most children are treated for leukemia at major medical centers, where treatment often involves taking part in clinical trials to provide the most up-to-date care. Several important questions are now being studied in clinical trials. Among them are:
- Why do some children with acute lymphocytic leukemia (ALL) relapse after treatment, and how can this be prevented?
- Are there other prognostic factors that will help identify which children need more or less intensive treatment?
- Do some children with high-risk ALL need to get radiation therapy to the brain, or can it be avoided?
- Can acute myelogenous leukemia (AML) be treated more effectively by using more intensive chemotherapy, followed by growth factors to help restore the child's normal bone marrow function?
- Can chemotherapy drug resistance in AML be reversed?
- Are there better drugs or combinations of drugs for treating the different types of childhood leukemia?
- Can drugs, toxins, or radiation be specifically targeted to the leukemia cells by using manmade antibodies? Such antibodies can now be designed to specifically seek out leukemia cells, which are then destroyed by the drug, toxin, or radiation.
- Can naturally produced "biologic response modifiers" help the body's immune system fight the leukemia cells?
- When exactly should a stem cell transplant be used to treat ALL or AML?
- How effective are stem cell transplants in children who don't have a brother or sister who is a good tissue type match?
- Can a second stem cell transplant help children who relapse after a first stem cell transplant?
- Can the outlook for children with ALL with a translocation between chromosomes 9 and 22 be improved? Children whose leukemia cells have this translocation, known as the "Philadelphia chromosome", tend to have a lower cure rate than others with ALL. Imatinib (Gleevec) and dasatinib (Sprycel), drugs that specifically kill cells with this translocation, have been very helpful in treating certain leukemias in adults. Studies are now under way to see if adding these drugs to chemotherapy can improve treatment outcomes. Early study results of this approach have been promising so far.
Additional resources for childhood leukemia
More information from your American Cancer Society
The following information may also be helpful to you. These materials may be ordered from our toll-free number, 1-800-227-2345.
After Diagnosis: A Guide for Patients and Families (also available in Spanish)
Bone Marrow and Peripheral Blood Stem Cell Transplant
Childhood Cancer: Late Effects of Cancer Treatment
Children Diagnosed With Cancer: Dealing With Diagnosis (also available in Spanish)
Children Diagnosed With Cancer: Financial and Insurance Issues
Children Diagnosed With Cancer: Returning to School
Children Diagnosed With Cancer: Understanding the Health Care System (also available in Spanish)
Clinical Trials: What You Need to Know
Family Medical Leave Act (FMLA)
Health Professionals Associated With Cancer Care
Understanding Chemotherapy: A Guide for Patients and Families (also available in Spanish)
Understanding Radiation Therapy: A Guide for Patients and Families (also available in Spanish)
What Happened to You, Happened to Me (children's booklet)
When Your Brother or Sister Has Cancer (children's booklet)
When Your Child's Treatment Ends: A Guide for Families
The following books are available from the American Cancer Society. Call us at 1-800-227-2345 to ask about costs or to place your order.
Because... Someone I Love Has Cancer (kids' activity book)
Caregiving: A Step-By-Step Resource for Caring for the Person with Cancer at Home
Jacob Has Cancer: His Friends Want to Help (coloring book for a child with a friend who has cancer)
Let My Colors Out (picture book for young children)
What's Up with Richard? Medikidz Explain Leukemia (graphic novel for teens)
National organizations and Web sites*
In addition to the American Cancer Society, other sources of patient information and support include:
American Childhood Cancer Organization (formerly Candlelighters)
Toll-free number: 1-800-366-2223
Web site: www.candlelighters.org
Children's Leukemia Research Association (CLRA)
(also known as National Leukemia Research Association)
Telephone: 1-516-222-1944
Web site: www.childrensleukemia.org
CureSearch (National Childhood Cancer Foundation and Children's Oncology Group)
Toll-free number: 1-800-458-6223
Web site: www.curesearch.org
Leukemia & Lymphoma Society
Toll-free number: 1-800-955-4572
Web site: www.lls.org
National Cancer Institute
Toll-free number: 1-800-4-CANCER (1-800-422-6237)
Web site: www.cancer.gov
National Children's Cancer Society, Inc.
Toll-free number: 1-800-532-6459 (1-800-5-FAMILY)
Web site: www.children-cancer.org
National Dissemination Center for Children with Disabilities (NICHCY)
Toll-free number: 1-800-695-0285 (also for TTY)
Web site: www.nichcy.org
Starlight Children's Foundation
Telephone: 1-310-479-1212
Web site: www.starlight.org
Other publications*
For adults
100 Questions & Answers About Your Child's Cancer, by William L. Carroll and Jessica Reisman. Published by Jones and Bartlett Publishers, 2004.
Cancer & Self-Help: Bridging the Troubled Waters of Childhood Illness, by Mark A. Chester and Barbara K. Chesney. Published by the University of Wisconsin Press, 1995.
Care for Children and Adolescents with Cancer: Questions and Answers. National Cancer Institute. Available at: www.cancer.gov/cancertopics/factsheet/NCI/children-adolescents or call 1-800-332-8615.
Childhood Cancer: A Handbook from St Jude Children's Research Hospital, by Grant Steen and Joseph Mirro (editors). Published by Perseus Publishing, 2000.
Childhood Cancer Survivors: A Practical Guide to Your Future, by Nancy Keene, Wendy Hobbie, and Kathy Ruccione. Published by O'Reilly and Associates, 2000.
Childhood Leukemia: A Guide for Families, Friends & Caregivers (3rd Edition), by Nancy Keene. Published by O'Reilly and Associates, 2002.
Children with Cancer: A Comprehensive Reference Guide for Parents (2nd Edition), by Jeanne Munn Bracken and Pruden Pruden. Published by Oxford University Press, 2005.
Educating the Child With Cancer: A Guide for Parents and Teachers, edited by Nancy Keene. Published by the Candlelighters Childhood Cancer Foundation, 2003.
Living with Childhood Cancer: A Practical Guide to Help Families Cope, by Leigh A. Woznick and Carol D. Goodheart. Published by American Psychological Association, 2002.
Surviving Childhood Cancer: A Guide for Families, by Margo Joan Fromer. Published by New Harbinger Publications, 1998.
When Bad Things Happen to Good People, by Harold Kushner. Published by G.K. Hall, 1982.
When Someone You Love Is Being Treated for Cancer. National Cancer Institute. Available at: www.cancer.gov/cancertopics/when-someone-you-love-is-treated, or call 1-800-332-8615.
Young People with Cancer: A Handbook for Parents. National Cancer Institute, 2003. Available at: www.cancer.gov/cancertopics/youngpeople, or call 1-800-332-8615.
Your Child in the Hospital: A Practical Guide for Parents (2nd Edition), by Nancy Keene and Rachel Prentice. Published by O'Reilly & Associates. 1999. (Also available in Spanish.)
Books for teens and children
Although these books are intended for children, younger kids are helped more when an adult reads with and helps the child reflect about what different parts of the book mean to the child.
The Amazing Hannah, Look at Everything I Can Do! by Amy Klett. Published by Candlelighters Childhood Cancer Foundation, 2002. For ages 1-6. (Also available in Spanish.)
Chemo, Craziness and Comfort: My Book about Childhood Cancer by Nancy Keene. Published by Candlelighters Childhood Cancer Foundation, 2002. Can be ordered from www.candlelighters.org. For ages 6-12.
Childhood Cancer Survivors: A Practical Guide to Your Future (2nd Edition), by Kathy Ruccione, Nancy Keene, and Wendy Hobbie. Published by Patient Centered Guides, 2006. For older teens.
Going to the Hospital, by Fred Rogers. Published by Paperstar Book, 1997. For children 4-8.
Life Isn't Always A Day at the Beach: A Book for All Children Whose Lives Are Affected by Cancer by Pam Ganz. Published by High-Five Publishing, 1996. Workbook for ages 6-10.
Little Tree: A Story for Children with Serious Medical Problems, by Joyce C. Mills. Published by Magination Press, 2003. For ages 4-8.
Living Well With My Serious Illness, by Marge Heegaard. Published by Fairview Press, 2003. For ages 8-12.
Me and My Marrow, by Karen Crowe. Published by Fujsawa Healthcare, 1999. For teens.
My Book for Kids with Cansur [sic], by Jason Gaes. Published by Viking Penguin, 1998. For ages 4-8.
Oncology, Stupology…I Want to Go Home! by Marilyn K. Hershey. Published by Butterfly Press, 1999. For ages 8-12. (Also available in Spanish.)
What About Me? When Brothers and Sisters Get Sick, by Allan Peterkin and Frances Middendorf. Published by Magination Press, 1992. For brothers and sisters (ages 4-8) of a child with cancer.
When Someone Has a Very Serious Illness: Children Can Learn to Cope with Loss and Change, by Marge Heegaard. Published by Woodland Press, 1991. For ages 6-12.
Why, Charlie Brown, Why? A Story About What Happens When a Friend Is Very Ill, by Charles M. Schultz. Published by Ballantine Publishing Group, 1990. For ages 6-12.
No matter who you are, we can help. Contact us anytime, day or night, for cancer-related information and support. Call us at 1-800-227-2345 or visit www.cancer.org.
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