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When Your Child Has Leukemia

Since your child has been diagnosed with leukemia, you're likely feeling shocked and scared. It's important to know that leukemia in children can be treated, and support is available for you and your child. Your child’s healthcare team will help you learn more about leukemia as you make decisions about your child’s treatment.

What is leukemia?

Cancer starts when cells change (mutate) and grow out of control. Leukemia is cancer that starts in cells in the bone marrow and blood. The bone marrow is the thick, spongy liquid inside of bones. It's where blood cells are made.

The blood is made up of three main types of cells:

  • White blood cells fight infection and disease.

  • Red blood cells carry oxygen all through the body to give a person energy.

  • Platelets help the blood clot to stop bleeding.

Leukemia usually affects the white blood cells. Healthy white blood cells form in the bone marrow. But with leukemia, large numbers of abnormal white blood cells called leukemia cells or blasts are made. Blasts live longer than normal white blood cells and crowd out the healthy cells. As time goes on, there are more blasts than healthy cells, and the blood can’t do its job. This leads to problems like infections and bleeding. It can also cause anemia, a condition when there are too few red blood cells.

Microscopic view of blood cells comparing normal blood and leukemia.
Leukemic blasts are abnormal white blood cells. Their shape and size are different than those of normal white blood cells.

Who gets leukemia?

Leukemia is the most common type of childhood cancer in the U.S. Children at any age can get leukemia, but younger children are affected most often.

Leukemia is not contagious. This means it can’t be passed from person to person.

What causes leukemia?

Leukemia starts when white blood cells change and don't grow the way they should. What causes this to happen is not fully known.

Changes in certain genes, called mutations, may affect the way your child’s cells grow. But this gene mutation is random and couldn’t have been prevented. In rare cases, other factors, such as certain inherited conditions or exposure to certain chemicals or radiation, might play a role. But most often, the cause of leukemia in children is unknown.

Types of leukemia

There are many different types and subtypes of leukemia. The main types of leukemia that affect children include:

  • Acute lymphoblastic leukemia (ALL) is the most common leukemia in children. ALL occurs when the body makes abnormal white blood cells called lymphoblasts. These cells don't grow into healthy white blood cells the way they should. ALL is a fast-growing cancer.

  • Acute myelogenous leukemia (AML) is the second most common leukemia in children. AML occurs when the body makes abnormal blood cells called myeloid blasts. These cells don't grow into healthy white blood cells, red blood cells, or platelets the way they should. AML tends to grow quickly.

  • Chronic myelogenous leukemia (CML) is rare in children. CML occurs because the body makes abnormal myeloid cells (much like AML). With CML, the white blood cells are more mature, but there are too many of them. CML develops more slowly than AML.

  • Juvenile myelomonocytic leukemia (JMML) is another rare type of leukemia in children. It's most often seen in children under age 2. JMML starts in myeloid cells, but it usually doesn't grow as fast as AML or as slow as CML.

Your child's healthcare provider will talk with you about the type of leukemia your child has and what it means. Ask your child's provider to explain the details of the cancer to you in a way you can understand. Ask any questions and talk about your concerns.

What are the symptoms of leukemia?

Some common symptoms of leukemia include:

  • Fever

  • Infections that don't go away

  • Pale skin

  • Easy bruising or bleeding

  • Bone or joint pain

  • Swollen lymph nodes

  • Swelling in the abdomen (belly)

  • Flat red dots on the skin that look like a rash

  • Feeling very tired (fatigue)

  • Weakness

  • Weight loss

Many of these may be caused by other health problems. Still, it's important that your child see a healthcare provider if they have these symptoms. Only a healthcare provider can tell if your child has cancer.

How is leukemia diagnosed?

The healthcare provider will ask you about your child’s symptoms, health history, and family history. A physical exam will be done. Your child may also have blood tests done. These help the provider see how well your child’s bone marrow is working and get an idea of their overall health.

If your provider thinks your child has leukemia, you'll likely be referred to a pediatric oncologist. This doctor has special training in treating cancer in children. Other tests may be needed to learn more about the exact type of leukemia your child has. These can include:

  • More blood tests to gather more information and to look at blood cells under a microscope

  • Bone marrow aspiration and biopsy to take out a small piece (sample) of bone marrow for testing

  • Lumbar puncture, also called spinal tap, to take a sample of the fluid that surrounds the spinal cord and brain so it can be checked for leukemia cells

How is leukemia treated?

Chemotherapy (chemo) is the main treatment used for most types of leukemia. It uses strong medicines to destroy cancer cells. The kind of chemo your child gets depends on the type of leukemia your child has. Many times, a combination of chemo medicines is used. The medicines may be given by mouth, injection, or right into the blood through a tube (IV) that’s put into a vein. Some children might benefit from high-dose chemo followed by a stem cell transplant. Your child’s healthcare provider can tell you more.

Children with CML typically get a type of medicine called targeted therapy instead of chemo. These drugs attack specific changes inside the CML cells.

Radiation may be part of the treatment plan in certain cases. Surgery is rarely used to treat leukemia.

Supportive treatments

Supportive treatments help protect your child from infection, prevent discomfort, and bring their blood counts into a healthy range. During your child’s treatment, antibiotics might be given to help prevent and fight infection. Other medicines may also be needed to help ease side effects caused by chemo, such as nausea. Your child may also need blood transfusions to restore the blood cells. These supportive treatments aren't directly treating the leukemia, but they're used to help with problems caused by the leukemia and/or treatment.

What are the long-term concerns?

Leukemia in children can often be cured with treatment. Still, chemo can cause problems, such as damage to certain organs, like the heart, bones, or lungs, and other long-term side effects. Your child’s health will need to be watched closely for life. This may include clinic visits, blood tests, and imaging scans. Most children cured from leukemia can expect to live typical lives even though they may need some extra medical attention and may have some long-term medical issues.

Coping

Hearing your child has cancer is scary and confusing. Remember that you're not alone. Your child’s healthcare team will work with you, your family, and your child throughout your child’s illness and care.

You may want to look for information and support for you and your family, too. Doing so can help you cope with the changes cancer brings. Learning about your child's cancer and talking with others who also have a child with cancer may help you and your family cope and know what to expect. Some helpful resources include:

Online Medical Reviewer: Adam Levy MD
Online Medical Reviewer: Kimberly Stump-Sutliff RN MSN AOCNS
Online Medical Reviewer: L Renee Watson MSN RN
Date Last Reviewed: 12/1/2021
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