The standard treatment (also sometimes called the standard of care) for each type of leukemia is the treatment that has worked best for the most children up to that point in time. The current standard treatments are the result of decades of clinical research studies. As researchers analyze the results from ongoing or completed clinical trials, they accumulate knowledge and make changes in standard treatments. In the 1980s, for example, most children with acute lymphoblastic leukemia (ALL) received cranial radiation as standard treatment. Carefully controlled clinical trials later showed that most children with ALL do not require cranial radiation, and even those who do can be given a lower dose than was used in the 1980s. As a result, the standard treatment for children with ALL was changed.

To learn about the standard treatment for your child’s type of leukemia, contact the National Cancer Institute at (800) 422-6237 or go to the pediatric section of its website at www.cancer.gov/cancertopics/pdq/pediatrictreatment. The NCI provides accurate information about childhood leukemias, state-of-the-art treatments, and ongoing clinical trials. Two versions are available online:

• One for families, which uses simple language and contains no statistics; and
• One for professionals, which is technical, thorough, and includes citations to scientific literature.

The standard treatments for each type of leukemia are covered in the following chapters:

• Chapter 3, Acute Lymphoblastic Leukemia
• Chapter 4, Acute Myeloid Leukemia
• Chapter 5, Juvenile Myelomonocytic Leukemia
• Chapter 6, Chronic Myelogenous Leukemia

The Protocol

If your child receives the standard treatment, you will be given a written copy of the treatment plan, called a protocol. Just like a recipe for baking a cake, a protocol has a list of ingredients, the amounts to use, and the order to use them in for the best chance for success. The protocol lists the treatments, drugs, dosages, and tests for each segment of treatment and for follow-up care.

The portion of the protocol devoted to the schedule for treatments and tests may be quite long. The family may also be given an abbreviated version (one to two pages) for quick reference on a daily basis. This shortened part of the protocol is often called the “roadmap.” Parents and teenage patients should review these documents carefully with the treatment team to ensure they understand them.

It took me a long time to get over my hang-up that things needed to go exactly as per protocol. Any deviations on dose or days were a major stress for me. It took talking to many parents, as well as doctors and nurses, to realize and feel comfortable with the fact that no one ever goes along perfectly and that the protocol is meant as the broad guideline. There will always be times when your child will be off drugs or on half dose because of illness or low counts or whatever. It took a long time to realize that this is not going to ruin the effectiveness, that the child gets what she can handle without causing undue harm.