I really had no idea what was in store for me…I cried for about 15 minutes…I remember…a girl about 12 came into my [hospital] room one day and said she had had leukemia for six months. She looked so normal and healthy, I really began to think I could get well and live normally… that was long ago; I’m now just fine!” — Julie C., age 18.

As a child, Julie had leukemia-the type of cancer most common in children. It is estimated that of more than 28,200 new cases of leukemia diagnosed in 1992, about 2,500 will be children.

Until 1960, childhood leukemia was fatal, with only rare exceptions. Patients usually survived only three to six months. Since then, dramatic medical progress has changed that. The news about leukemia treatment, recovery, and survival rates is encouraging.

What Is Leukemia?

Leukemia is not a single disease but several, involving the body’s blood-forming tissues-the spleen, lymphatic system, and bone marrow. While leukemia’s cause is still undertermined, heredity, radiation, and even viruses (though leukemia is not contagious) are among possibilities now under investigation.

Leukemia involves the unregulated (cancerous) growth of blood cells in the bone marrow. Bone marrow makes erythrocytes, the oxygen-carrying red blood cells (RBCs); thrombocytes, blood platelets that help stop bleeding after an injury; and leukocytes, the white blood cells (WBCs) that fight infections.

Immature WBCs are known as lymphoblasts, or “blasts”; they can be normal or leukemic. Any of the three types of WBCs (neutrophils, lymphocytes, and monocytes) can become cancerous, but only one type is affected in each patient.

Cancerous cells grow too fast to mature and perform their normal functions. Leukemic blasts keep forming, crowding out RBCs or normal WBCs.

What Are the Symptoms?

People with leukemia can have a variety of symptoms including anemia (a low number of RBCs, causing a lack of oxygen to the cells), fatigue, stomach or joint pain, headache, fever, bleeding problems, unusual bruising, and frequent infections. Sometimes leukemic blasts overflow from the marrow into the blood, enter other organs (the spleen, liver, etc.), and grow there. These organs then become enlarged.

“The whole situation really frightened me,” Julie said. “Questions kept coming to my mind. Like, what will I be able to do? How will I walk again? Will I be able to run? What is chemotherapy? What do the drugs do? How long will I be sick?”

Types and Treatment

Leukemia can be acute or chronic. The acute form appears suddenly and without treatment progresses rapidly. Almost all childhood leukemias are acute. The chronic form allows the production of some normal cells and progresses more slowly.

Acute lymphocytic leukemia (ALL) is the most common form (90 percent) in children. Most children are diagnosed between the ages of 2 and 8.

Acute myelogenous leukemia (AML) is more common in persons over age 25 but sometimes occurs in teenagers and children.

Because symptoms in the early stages of leukemia may mimic other diseases, a physical examination, blood tests, and tests of the spinal fluid and bone marrow must be done to diagnose leukemia.

Treating leukemia begins with chemotherapy — the use of one or more drugs to kill the leukemic cells. This allows the normal blood cells to start growing again. When this happens, the disease is said to be in remission.

Next, doctors use another drug or radiation (X-ray) therapy to kill any leukemic cells that may still be alive. This can help avoid a recurrence of the disease, known as a relapse.

Dealing with the Side Effects

Patients also have to deal with the side effects caused by the treatments.

“Losing your hair is a weird feeling… younger kids like to go without any scarf or wig,” Julie said. “The junior high girls like to wear a wig…I wore a scarf…as active as I am…just put on a scarf and go.”

Remko, another patient, said: “I was bald for a summer and almost all through the ninth grade, but I wore a hat during school. A few people teased me. It didn’t bother me. I knew my hair would grow back.”

“Getting sick [nausea and vomiting] was terrible,” said Kelly, age 17. “Everybody’s different and has different reactions to the drugs.”

Most of the unpleasant side effects from the various treatments are temporary and disappear when the treatments are over.

As Julie says, “The side effects only last awhile; the life you live lasts a lot longer.”

You may have heard news stories asking people to be tested to see if their bone marrow is compatible with that of a leukemia patient. Transplanting bone marrow from a family member into a patient is another treatment sometimes used in ALL and AML. When it is used, this procedure usually follows chemical and radiation therapy. The new marrow begins producing normal cells.

There is still much more work to be done. But today, says the Leukemia Society, more than 70 percent of the children with ALL survive and are free from leukemia. Chemotherapy continues for about three years, and no further treatment is required. These leukemia-free patients are considered cured.

While the cure rate for AML is lower (20 to 30 percent), it is improving as new treatments are discovered.

The Will to Survive

The survivors of childhood leukemia show a wonderfully positive attitude and a strong determination to win. The will to survive counts!

“I lived with all this special treatment for two years…I didn’t give up…the other day I received a letter saying there was no more sign of tumor. So don’t give up. I didn’t, and look what happened to me!”-Betsy, age 19.

Massive research efforts continue, offering good reason to feel optimistic that survival rates will continue to increase until leukemia at last becomes a completely curable disease.