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Coping and support
By Mayo Clinic staffSurvival rates for acute lymphocytic leukemia have improved dramatically during the past 30 years. But encouraging survival rates don't always seem that encouraging at the moment you learn that you or your child has leukemia.
Additionally, although treatment for adult and childhood acute lymphocytic leukemia is very successful, it can be a long road. Treatment typically lasts two and a half to three and a half years, although the first three to six months are the most intense. During maintenance phases, kids can usually live a relatively normal life and go back to school. And adults may be able to continue working. Still, you'll likely need some tips for coping just as much as you need an explanation of the tests and treatment options:
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Get down to particulars. The term "leukemia" can be confusing, because it refers to a group of cancers that aren't all that similar except for the fact that they affect the bone marrow and blood. You can waste a lot of time gathering information that doesn't apply to you or your child.
To avoid that, ask your doctor to write down as much information about your specific disease as possible. Then narrow your search for information accordingly. Write down questions you want to ask your doctor before each appointment, and look for information in your local library and on the Internet.
Good sources include the National Cancer Institute, the American Cancer Society, and the Leukemia and Lymphoma Society. Also, consider bringing a tape recorder to appointments. Your doctor may present you with a lot of details in a single visit, and it can be helpful to capture those details and play them back later.
- Lean on your whole health care team. At major medical centers and pediatric cancer centers, your health care team may include psychologists, psychiatrists, recreation therapists, child-life workers, teachers, dietitians, chaplains and social workers. These professionals can help with a whole host of issues, including explaining procedures to children, finding financial assistance and arranging housing for during treatment. Don't hesitate to rely on their expertise.
- Explore programs for children with cancer. Major medical centers and nonprofit groups offer numerous activities and services specifically for children with cancer and their families. Examples include summer camps, support groups for siblings and wish-granting programs. Ask your health care team about programs in your area
- Help family and friends understand your situation. Set up a free, personalized Web page at the not-for-profit Web site CaringBridge. This allows you to tell the whole family about appointments, treatments, setbacks and reasons to celebrate — without the stress of calling everyone every time there's something new to report. A Web page helps your family and friends understand what you're going through, and it allows them to send notes of encouragement, even when they live far away.
