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When Your Child Has Leukemia

Microscopic view of blood cells comparing normal blood and leukemia.

Since your child has been diagnosed with leukemia, you're likely feeling shocked and scared. But, support and treatment are available. Your child’s healthcare team will help you as you make important decisions regarding your child’s health.

What is leukemia?

Leukemia is cancer of the bone marrow (the spongy inside of bones) and blood. The blood is made up of 3 main types of cells:

  • White blood cells fight infection.

  • Red blood cells carry oxygen throughout the body, which gives a person energy.

  • Platelets help the blood clot, which helps stop bleeding when a person is injured.

Leukemia usually affects the white blood cells. When a person is healthy, white blood cells form in the bone marrow. With leukemia, large numbers of abnormal white blood cells called leukemic blasts are produced. These blasts outlive and crowd out healthy cells. As time goes on, there are more blasts than healthy cells, so that the blood can’t do its job. This leads to problems, such as infections and bleeding. Anemia can also occur. This is a condition in which the blood doesn’t have enough red blood cells.

Who gets leukemia?

Leukemia is the most common type of childhood cancer. Children at any age can get leukemia, but younger children are affected most often. Leukemia is not contagious, meaning the child can’t pass it to another person.

What causes leukemia?

Leukemia occurs when white blood cells grow abnormally (mutate). What causes this to happen is not fully known. Mutations in certain genes may affect the way your child’s cells grow. This gene mutation is random and couldn’t have been prevented. In rare cases, other factors, such as certain inherited syndromes 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. Your child’s healthcare provider will talk to you about the type your child has. The main types of leukemia that affect children include the following:

  • Acute lymphoblastic leukemia (ALL) is the most common form of leukemia in children. It accounts for about 3 out of 4  leukemia cases each year in the U.S. ALL occurs when the body makes abnormal lymphoid blasts (a type of abnormal white blood cell). ALL is a fast-growing cancer.

  • Acute myelogenous leukemia (AML) is the second most common form of leukemia in children. It accounts for most of the remaining cases. AML occurs when the body makes abnormal myeloid blasts (a type of abnormal white blood cell). Children who have had chemotherapy in the past have an increased risk of AML. 

  • Chronic myelogenous leukemia (CML) is rare in children. CML occurs because the body makes abnormal myeloid cells. 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 begins from myeloid cells, but it usually doesn't grow as fast as AML or as slow as CML.

What are the symptoms of leukemia?

Some common symptoms of leukemia include:

  • Fever

  • Infections that don't go away

  • Pale skin

  • Bruising or bleeding easily

  • Bone or joint pain

  • Swollen lymph nodes

  • Swelling in the abdomen (belly)

  • Loss of appetite

  • Tiredness (fatigue)

  • Weakness

Not every child has all of these symptoms.

How is leukemia diagnosed?

The healthcare provider will examine your child. You will be asked about your child’s health history. Your child may also have one or more of the following:

  • Blood tests to take samples of blood and examine them under a microscope

  • Bone marrow aspiration and biopsy to take a sample of bone marrow from the hipbone

  • Lumbar puncture, also called spinal tap, to take a sample of the fluid that surrounds the spinal cord from the child’s lower back

How is leukemia treated?

Chemotherapy (“chemo”) is the main treatment used for most types of leukemia. It destroys cancer cells with powerful cancer-fighting medicine. The kind of chemo medicine your child receives depends on the type of leukemia your child has. Your child may receive a combination of chemo medicines. They may be given by mouth, injection, or through a tube (IV) that’s usually put into a vein in the arm or chest. Some children might benefit from high-dose chemotherapy followed by a stem cell transplant. Your child’s healthcare provider can tell you more. . 

Children with CML typically get a type of drug called a targeted therapy, which attacks a specific defect inside the CML cells.

Surgery is rarely part of the diagnosis or treatment of leukemia. Radiation may be part of the treatment plan.

Supportive treatments

The goal of supportive treatments is to protect the child from infection, prevent discomfort, and bring the body’s blood counts to a healthy range. During your child’s treatment, he or she may be given antibiotics. These medicines help prevent and fight infection. Antinausea and other medicines may also be given. These help ease side effects caused by chemotherapy. Your child may receive a blood transfusion to restore the blood cells destroyed by treatment. Blood is taken from a donor and stored until the child is ready to receive it.

What are the long-term concerns?

Leukemia is often curable with treatment. But chemotherapy may cause some problems, such as damage to certain organs. Your child’s health will need to be monitored for life. This may include clinic visits, blood tests, and ultrasounds of the heart.

Call your child’s healthcare provider 

Unless advised otherwise by your child’s healthcare provider, call the provider right away if:

  • Your child is 3 months old or younger and has a fever of 100.4°F (38°C) or higher. Get medical care right away. Fever in a young baby can be a sign of a dangerous infection.

  • Your child is of any age and has repeated fevers above 104°F (40°C).

  • Your child is younger than 2 years of age and a fever of 100.4°F (38°C) continues for more than 1 day.

  • Your child is 2 years old or older and a fever of 100.4°F (38°C) continues for more than 3 days.

  • Your baby is fussy or cries and cannot be soothed.

Also call your child's healthcare provider right away if your child has any of these possible signs of infection:  

  • Chills

  • Cough

  • Pain that can’t be controlled

  • Uncontrolled nausea or vomiting

  • Weakness

  • Diarrhea

Coping

Receiving a cancer diagnosis for your child is scary and confusing. It’s important to remember that you are not alone. Your child’s healthcare team will work with you and your child throughout your child’s illness and care. You may also wish to seek information and support for yourself. Doing so can help you cope with the changes cancer brings. Learning about and talking with others who also have a child with cancer may help you and your family cope. Some helpful resources include:

  • Leukemia Research Foundation 
    www.leukemia-research.org

  • The Children’s Leukemia Research Association   
    www.childrensleukemia.org

  • The Leukemia & Lymphoma Society    
    www.leukemia-lymphoma.org

 

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