Childhood Leukemia

Childhood leukemia is cancer in your child’s blood or bone marrow (where blood cells are made). It’s the most common type of childhood cancer. About 4,000 children in the U.S. are diagnosed each year.

The most common leukemias are “acute,” or fast-growing:

• Acute lymphoblastic leukemia affects 3 in 4 children with leukemia.
• Acute myeloid leukemia (AML) is the second most common type.

Less often, children develop slow-growing (chronic) forms.

Learning your child has blood cancer can leave you searching for answers. The good news is that most of these cancers are curable. Still, your child’s outlook depends on their unique diagnosis.

Symptoms of childhood leukemia

Early symptoms can be tough to spot because they’re common in other conditions, too. But if any of the signs or symptoms listed here seem to last a long time, schedule an appointment with your child’s pediatrician:

• Being extremely tired, weak or pale
• Belly pain or a swollen belly (especially on the left side, where their spleen is)
• Bone pain (your child may limp or not want to walk)
• Bruising or bleeding more frequently than usual
• Fever, chills or heavy sweating
• Red, purple or brown spots beneath your child’s skin (signs of bleeding)
• Swollen lymph nodes in your child’s neck, armpit or groin
• Unexplained weight loss

Childhood leukemia causes

Leukemia happens when there’s a change (mutation) in the genes within a cell. Usually, these mutations affect white blood cells. It prevents them from doing their regular job: fighting infections.

The abnormal cancer cells multiply out of control in bone marrow. Bone marrow is where your body makes most of its blood cells. The cancer cells crowd out healthy white blood cells, red blood cells and platelets. Eventually, the cancer cells spill out of the bone marrow and into your child’s blood and/or lymph nodes. From there, they can spread and cause more damage.

Researchers don’t know what causes mutations in the first place. But they’ve discovered specific gene changes that are common in childhood leukemia. These discoveries have helped doctors design life-saving treatments to fight this cancer.

Risk factors

Having a genetic disorder may increase your child’s risk of leukemia. Some disorders increase your child’s cancer risk in general. Others may make it harder for their immune system to fight cancer cells.

These include:

• Ataxia-telangiectasia
• Bloom syndrome
• Down syndrome
• Fanconi anemia
• Li-Fraumeni syndrome
• Severe congenital neutropenia
• Shwachman-Diamond syndrome
• Wiskott-aldrich syndrome

Some extremely rare genetic disorders are also linked to increased risk.

Other factors include radiation exposure and having a sibling — especially a twin — who has leukemia.

How doctors diagnose this condition

Diagnosis begins with talking to your child’s pediatrician about their symptoms. Try to provide as much information as you can during this appointment. Let them know the changes you’ve noticed, including when symptoms started and how severe they are.

You may need to meet with additional healthcare providers along the way, including a pediatric oncologist.

Your child will likely need several tests, which may include:

• A physical exam to check for swollen lymph nodes or an enlarged liver or spleen
• Blood tests, to check for abnormal blood cells
• Imaging scans, to check for signs of cancer inside your child’s body
• Biopsies, to check for cancer cells in their bone marrow or lymph nodes
• Lumbar puncture, to check for cancer cells in the fluid surrounding your child’s brain or spine
• Genetic tests, to check for common mutations found in childhood leukemia

Most of these tests are simple and noninvasive. For procedures that involve removing tissue, your child will be completely relaxed or asleep. Their care team will ensure the process is as easy as possible, for both you and your child.

How is childhood leukemia treated?

Children with leukemia usually receive standard cancer treatments along with new cancer therapies. The goal is to provide the best cancer treatment with the least amount of side effects. Your child’s care team will discuss all options with you so you’re confident in your child’s treatment plan.

Treatments for children with leukemia include:

• Chemotherapy: This is the most common treatment to kill cancer cells. Your child may get this treatment as an infusion (IV), a shot or a pill.
• Radiation therapy: Rarely, children get radiation alongside chemotherapy. Often, this treatment happens as part of a stem cell transplant.
• High-dose chemotherapy with a stem cell transplant: With this treatment, your child receives chemotherapy to kill cancer cells. Then, they get new stem cells (an early form of blood cells) to replace the cancer cells.
• Targeted therapy: This treatment targets cancer cells with specific gene changes.
• Immunotherapy: This treatment strengthens your child’s immune system so it’s better at fighting leukemia.
• Palliative care: This treatment can help your child manage cancer treatment side effects. Unlike end-of-life care, it’s available no matter your child’s prognosis (likely treatment outcomes).
• Clinical trials: A clinical trial tests the safety and effectiveness of new treatments. Your child may be able to access new treatments, like immunotherapy, by participating. Your child’s provider will explain the process (and benefits) to you.

Recovery time

Most children receive treatment in cycles, with recovery periods between. The treatment break reduces side effects.

But it may take a few years to finish treatment entirely. This is because treatment involves several parts. At first, the goal of treatment may be to send cancer into remission (no cancer signs or symptoms). This may involve several cycles (or rounds) of chemotherapy. Even after remission, your child will likely need more treatment to kill cancer cells that may be hiding. This helps prevent cancer from coming back.

Ask your child’s care team what their treatment and recovery timeline will look like.

When should I see my healthcare provider?

Your child will receive ongoing care during and after treatment. In the meantime, make sure you know what side effects to expect. Ask when you should contact your child’s healthcare provider or seek emergency care.

What can I expect if my child has this condition?

Most childhood leukemias are curable. With treatment, it’s possible that your child can live cancer-free for the rest of their lives. But much depends on the type of leukemia and the type of gene mutations involved. For example, some types are more likely to grow back. Your healthcare provider can discuss this with you.

The survival rates for childhood leukemia are excellent. About 86 out of every 100 children diagnosed are alive five years later. The five-year mark is important because most cancers that don’t come back within five years don’t come back at all.

Still, there can be long-lasting effects that you’ll need to discuss with your child’s provider. For example, survivors of childhood cancer may be at increased risk of developing a different kind of cancer in the future. Both the cancer itself and treatment can increase their risk of conditions later in life.

Your child’s cancer care providers will work with you to develop a cancer survivorship plan. It includes information about their diagnosis, treatment and future care they’ll need. Every provider your child sees in the future needs to know this information.

Is there anything I can do to help my child feel better?

As your child’s primary support, it’s important to realize that you don’t (and shouldn’t) have to go it alone. Your child’s care team is not only there to provide treatment, but they’re also there to support you.

They can provide tips about how to talk to your child about their diagnosis. And they can connect you with specialists like a dietitian and counselor, so your child receives both the mind and body support they need.