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Leukemia - Acute Lymphoblastic - ALL - Childhood - Overview

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Childhood Acute Lymphoblastic Leukemia (ALL). To see other pages, use the menu on the side of your screen. Think of that menu as a roadmap to this full guide.

Leukemia is a cancer of the blood. Leukemia begins when healthy blood cells change and grow uncontrollably. Acute lymphoblastic leukemia (ALL) is a cancer of the lymphocytes, a type of white blood cell involved in the body’s immune system. It is the most common type of cancer in children.

About lymphocytes and lymphoblasts

Lymphocytes are made in the bone marrow, the spongy, red tissue in the inner part of the large bones. Lymphocytes are found in the blood, lymph nodes, and spleen. Healthy lymphocytes fight bacterial and viral infections. In people with ALL, new lymphocytes do not develop into mature cells, but stay as immature cells called lymphoblasts.

About ALL

When a child has ALL, the lymphoblasts fill the bone marrow and crowd out other normal cells, preventing the production of red blood cells (cells that carry oxygen to tissues), many other types of normal white blood cells (cells that fight infection), and platelets (cells that help blood to clot). If the bone marrow is not functioning correctly, the child may experience anemia, easy bruising, bleeding, or infection.

  • Anemia is from too few red blood cells. Anemia can lead to fatigue, irritability, sleepiness, paleness, shortness of breath, and a rapid heartbeat.

  • Bruising or bleeding from injuries may occur more easily because the blood cannot clot normally when the platelet count is low.

  • Infection may occur more often if the blood has too few normal white blood cells. Many types of white blood cells are needed to fight infections caused by different germs. 

The leukemic lymphoblasts may also collect in the child’s lymph nodes and cause them to swell. Lymphoblasts may also spread to other organs, including the skin, liver, spleen, a girl’s ovaries, a boy’s testicles, and the spinal fluid.

This section is about ALL in children, sometimes called childhood ALL or pediatric ALL. Learn more about acute lymphocytic leukemia in adults.

Looking for More of an Overview?

If you would like additional introductory information, explore these related items. Please note these links will take you to other sections on Cancer.Net:

The next section in this guide is Statistics and it helps explain how many people are diagnosed with this disease and general survival rates. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Lymphoblastic - ALL - Childhood - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will find information about how many children are diagnosed with this type of cancer each year. You will also learn some general information on surviving the disease. Remember, survival rates depend on several factors. To see other pages, use the menu on the side of your screen.

ALL is the most common type of childhood cancer. Approximately 3 of 4 children who are diagnosed with leukemia are diagnosed with ALL. It is most common in children younger than 5.

The 5-year survival rate tells you what percent of children live at least 5 years after the cancer is found. Percent means how many out of 100. The 5-year survival rate for children with ALL has greatly improved over time and is now 89%. For children diagnosed with acute leukemia, those who remain free from the disease after 5 years are generally considered “cured” because it is rare for acute leukemia to recur after this amount of time.

It is important to remember that statistics on how many children survive this type of cancer are an estimate. The estimate comes from data based many children with this cancer in the United States each year. So, your own child’s risk may be different. Doctors cannot say for sure how long any child will live with ALL. Also, experts measure the survival statistics every 5 years. This means that the estimate may not show the results of better diagnosis or treatment available for less than 5 years. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society’s (ACS) publication, Cancer Facts & Figures 2016, and the ACS website.

The next section in this guide is Medical Illustrations. It offers drawings of body parts often affected by this disease. Or, use the menu on the left side of your screen to choose another section to continue reading this guide.

Leukemia - Acute Lymphoblastic - ALL - Childhood - Medical Illustrations

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will find a basic drawing about the main body parts affected by this disease. To see other pages, use the menu on the side of your screen.

Childhood Leukemia Anatomy

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Childhood Leukemia Anatomy

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The next section in this guide is Risk Factors and it explains what factors may increase the chance of developing this disease. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Lymphoblastic - ALL - Childhood - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will find out more about the factors that increase the chance of developing this type of cancer. To see other pages, use the menu on the side of your screen.

A risk factor is anything that increases a person’s chance of developing cancer. Although risk factors often influence the development of cancer, most do not directly cause cancer. Some people with several risk factors never develop cancer, while others with no known risk factors do.

Although doctors don’t know what causes the vast majority of childhood leukemia, some evidence shows that certain genetic factors play a role in ALL. Children who are born with conditions that have been linked to genetic and immune system problems, such as Down syndrome, ataxia telangiectasia, and Bloom syndrome, may have a higher risk of developing leukemia. A child with an identical twin that develops ALL before age six has an increased risk of developing leukemia. If an identical twin develops leukemia within the first few months of life, the other twin will almost always develop the same type of leukemia.

The next section in this guide is Symptoms and Signs and it explains what body changes or medical problems this disease can cause. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Lymphoblastic - ALL - Childhood - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu on the side of your screen.

Children with ALL often experience the following symptoms or signs. Sometimes, children with ALL do not show any of these symptoms. Or, these symptoms may be caused by a medical condition that is not cancer. The early signs of ALL can look very much like the flu or other common illnesses. When one or more of these symptoms lasts for longer than one would expect, or you are worried about a symptom or sign on this list, please talk with your child’s doctor.

  • Frequent infections

  • A fever that doesn’t go away

  • Feeling weak and tired all the time

  • Bone pain

  • Swollen lymph nodes (in the neck, under the arms, and groin, for example)

  • Paleness

  • Bruising or bleeding easily

  • Difficulty breathing

  • Headache

  • Enlarged liver or spleen

If you are concerned about one or more of the symptoms or signs on this list, please talk with your child’s doctor. Your doctor will ask how long and how often your child has been experiencing the symptom(s), in addition to other questions. This is to help find out the cause of the problem, which is called a diagnosis.

If cancer is diagnosed, relieving symptoms remains an important part of care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with your child’s health care team about symptoms your child has, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis and it explains what tests may be needed to learn more about the cause of the symptoms. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Lymphoblastic - ALL - Childhood - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will find a list of the common tests, procedures, and scans that doctors can use to find out what’s wrong and identify the cause of the problem. To see other pages, use the menu on the side of your screen.

Doctors use many tests to diagnose leukemia and determine if it has spread to another part of the body, called metastasis. Some tests may also determine which treatments may be the most effective. A patient history, physical examination, complete blood cell count (CBC), and bone marrow aspiration (see below) are the main procedures used to diagnose ALL or rule out other conditions.

  • Blood tests. A CBC provides a count of each type of cell in the blood. The blood count may also show abnormal leukemia cells. The blood count is abnormal, in some way, for nearly all children with ALL when they are diagnosed.  A blood chemistry test gives information about the body’s kidney and liver function, as well as other measures, such as salt levels.

  • Bone marrow aspiration and biopsy. These two procedures are similar and often done at the same time to examine the bone marrow. Bone marrow has both a solid and a liquid part. A bone marrow aspiration removes a sample of the fluid with a needle. A bone marrow biopsy is the removal of a small amount of solid tissue using a needle. A pathologist then analyzes the sample(s). A common site for a bone marrow aspiration and biopsy is the pelvic bone, which is located in the lower back by the hip. The skin in that area is usually numbed with medication beforehand, and other types of anesthesia (medication to block the awareness of pain) may be used. 

    A bone marrow aspiration is recommended if the blood test shows unusual blood counts or immature cells, or if the doctor suspects that a child may have leukemia. From this test, the doctor can find out whether the child has leukemia and, if so, what type of leukemia it is. The doctor or nurse will collect more than one sample of bone marrow at the same time for other tests, such as chromosome and molecular genetic tests and immunophenotyping (see Classification). These additional tests are important to plan the most appropriate treatments.

  • Lumbar puncture (spinal tap).  A lumbar puncture can determine if the leukemia has spread to the cerebral spinal fluid (CSF). CSF is the fluid that flows around the brain and the spinal cord. During a lumbar puncture, the doctor uses a needle to take a sample of the CSF to look for leukemia cells. Doctors may give an anesthetic to numb the lower back before the procedure and/or use anesthesia to block awareness of the pain. Knowing whether or not there is leukemia in the central nervous system helps doctors choose the most appropriate treatment. All children with ALL receive medicine to treat or prevent leukemia of the central nervous system at the same time as the lumbar puncture at specific times during treatment. 

After diagnostic tests are done, your child’s doctor will review all of the results with you. If the diagnosis is ALL, these results also help the doctor describe the disease; this is called classification. Learn more about the first steps to take after a diagnosis of leukemia.  

The next section in this guide is Classification, and it explains the system doctors use to describe the extent of the disease. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Lymphoblastic - ALL - Childhood - Classification

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will learn about the factors that doctors use to describe this type of cancer. This is called classification. To see other pages, use the menu on the side of your screen.

There is no staging system for childhood ALL, compared to other types of cancer. However, there are a number of factors that help doctors choose the best treatment plan and predict the chance that the disease will come back after treatment. Doctors plan the child’s treatment based on these and other factors:

  • Age. Infants younger than 12 months and children age 10 and older need more intensive treatments.

  • White blood cell counts. Children with very high white blood cell counts need more intensive treatments. Commonly, white blood cell counts are labeled as very high if they are more than 50,000 per microliter (ml). 

  • Immunophenotyping. This test shows the types and amounts of proteins made or expressed by the leukemia cells. Knowing if the cancer cells express the proteins more like those of normal white blood cells called B-cells or T-cells will help doctors plan appropriate treatment. It is also useful to help predict how well treatment will work.

  • Genetic abnormalities in the leukemia cells. Abnormal numbers of chromosomes, abnormal structural changes in a chromosome, or certain molecular genetic changes in the chromosomes of leukemia cells may affect outcome and treatment. Note that the genetic changes referred to here are changes in the genes of the leukemia cells, not the child’s cells – most children with leukemia have completely normal genes.

  • Response to early treatment. How well treatment works in the first one to four weeks of treatment may predict the disease’s overall response to treatment. This will be determined by examining the child’s blood or bone marrow regularly. Recent studies have shown that some children may need more intense treatment to improve the chance of a cure. This includes children whose cancer is not responding well to early treatment or those who have high levels of residual leukemia cells (cells remaining after treatment) at the end of remission induction (see Treatment Options).

Information about the cancer’s classification will help the doctor recommend a specific treatment plan. The next section in this guide is Treatment Options. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Lymphoblastic - ALL - Childhood - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will learn about the different ways doctors use to treat children with this type of cancer. To see other pages, use the menu on the side of your screen.

The following are used to describe the state of disease for children with ALL:

Untreated ALL. The child has not yet received any treatment.

ALL in remission. There are normal levels of white and other blood cells after treatment. Physical examinations, blood counts, and bone marrow aspirates show no detectable leukemia. Remission is the absence of signs or symptoms of leukemia. However, it is very important to continue treatment, even when a child is in remission, to keep the leukemia from coming back.

Recurrent ALL. Recurrent ALL is leukemia that comes back after the child has had some period of remission. The leukemia may recur in the bone marrow, spinal fluid, a boy’s testicles, or less commonly, in other areas of the body. 

Refractory ALL. The leukemia did not go into remission, despite remission induction treatment (see below).

Treatment overview

In general, cancer in children is uncommon, so it can be hard for doctors to plan treatments unless they know what has been most effective in other children. That’s why more than 60% of children with cancer are treated as part of a clinical trial. Clinical trials are research studies that compare standard treatments (the best known treatments available) with newer approaches to treatments that may be more effective. Clinical trials may test such approaches as a new drug, a new combination of standard treatments, or new doses of current therapies. Studying new treatments involves careful monitoring using scientific methods, and all participants are followed closely to track their health and progress.

To take advantage of these newer treatments, it is best that children with cancer be treated at a cancer center with access to specialists in pediatric cancer. Doctors at these centers have extensive experience in treating children with cancer and have access to the latest research. A doctor who specializes in treating children with cancer is called a pediatric oncologist. If a pediatric cancer center is not nearby, general cancer centers sometimes have pediatric specialists who are able to be part of your child’s care.

In many cases, a team of doctors works with a child and the family to provide care; this is called a multidisciplinary team. Pediatric cancer centers often have extra support services for children and their families, such as child life specialists, nutritionists, physical and occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available.

Descriptions of the most common treatment options for childhood ALL are listed below. Three types of treatments are used to treat childhood ALL: chemotherapy, radiation treatment, and stem cell transplantation/bone marrow transplantation. All children with ALL receive chemotherapy. Some children will also need radiation or stem cell transplantation/bone marrow transplantation. Treatment options and recommendations depend on several factors, including the classification of ALL, possible side effects, and the patient’s preferences and overall health. Your child’s care plan may also include treatment for symptoms and side effects, an important part of cancer care. Take time to learn about all of your child’s treatment options and be sure to ask questions about things that are unclear. Also, talk about the goals of each treatment with your child’s doctor and what your child can expect while receiving the treatment. Learn more about making treatment decisions.

Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by stopping the cancer cells’ ability to grow and divide. Chemotherapy is given by a pediatric hematologist-oncologist, a doctor who specializes in treating cancer in children with medication.

Systemic chemotherapy gets into the bloodstream to reach cancer cells throughout the body. A chemotherapy regimen (schedule) usually consists of a specific number of cycles of drugs given over a set period of time. A patient may receive one drug at a time or combinations of different drugs at the same time.

Chemotherapy is the primary treatment for ALL. It may be given by mouth (orally), injected into a vein or muscle, or injected into the cerebral spinal fluid (CSF). It is generally done in four phases:

  • Remission induction therapy uses chemotherapy to kill as many of the leukemia cells as possible to cause the cancer to go into remission.

  • Central nervous system directed therapy kills any leukemia cells in the central nervous system and prevents the spread of the disease to the spinal fluid.

  • Consolidation therapy begins when the child’s leukemia has gone into remission. Higher doses of chemotherapy, or drugs not used during previous treatment, are used to kill the majority of the remaining leukemia cells.

  • Continuation or maintenance therapy lasts for two to three years to kill any remaining (residual) leukemia cells.

The side effects of chemotherapy depend on the individual and the dose used, but they can include short-term side effects like hair loss, fatigue, loss of appetite, nausea and vomiting, diarrhea, and kidney and liver problems. If a drug called vincristine (Oncovin, Vincasar) is part of your child’s chemotherapy, there may be muscle weakness and nerve pain. These side effects usually go away once treatment is finished. Other side effects related to chemotherapy that may last longer or develop after treatment is finished include bone and joint problems and learning problems.

The severity of the side effects depends on the type and amount of the drug being given and the length of time the child receives the drug. The side effects each child experiences may also be affected by other factors, including genetic differences in the way the medications are processed by the body, the child or teen’s age when diagnosed, and their overall health.

Learn more about the basics of chemotherapy and preparing for treatment. The medications used to treat cancer are continually being evaluated. Talking with your child’s doctor is often the best way to learn about the medications prescribed for your child, their purpose, and their potential side effects or interactions with other medications. Learn more about your prescriptions by using searchable drug databases.

Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to destroy cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. The most common type of radiation treatment is called external-beam radiation therapy, which is radiation given from a machine outside the body. A radiation therapy regimen (schedule) usually consists of a specific number of treatments given over a set period of time.

Radiation therapy for ALL is generally used only when the leukemia has spread to the brain, spinal fluid, or a boy’s testicles, or in high-risk disease to help prevent the spread of leukemia to the spinal fluid. Radiation therapy is more often used for patients with T-cell leukemia. 

Side effects from radiation therapy may include hair loss, fatigue, mild skin reactions, upset stomach, and loose bowel movements. Most side effects go away soon after treatment is finished. However, long-term side effects of radiation treatment to the brain and body can occur and may possibly include hormone problems affecting growth and metabolism, learning problems, and an increased risk of developing a second cancer including a brain tumor. Skin, salivary gland, and thyroid cancers can also occur after radiation treatment for ALL (see Follow-Up Care). Learn more about the basics of radiation therapy.

Stem cell transplantation/bone marrow transplantation

Stem cell transplantation is most often used as a treatment for recurrent or refractory ALL. Rarely, transplantation may be recommended as part of the initial therapy when leukemia is associated with very high risk features. A stem cell transplant is a medical procedure in which bone marrow that contains cancer is replaced by highly specialized cells, called hematopoietic stem cells that develop into healthy bone marrow. Hematopoietic stem cells are blood-forming cells found both in the bloodstream and in the bone marrow. Today, this procedure is more commonly called a stem cell transplant, rather than bone marrow transplant, because it is the stem cells in the blood that are typically being transplanted, not the actual bone marrow tissue.

Before recommending transplantation, doctors will talk with the patient and family members about the risks of this treatment and consider several other factors, such as the type of cancer, results of any previous treatment, and patient’s age and general health.

There are two types of stem cell transplantation depending on the source of the replacement blood stem cells: allogeneic (ALLO) and autologous (AUTO). ALLO uses donated stem cells, while AUTO uses the patient’s own stem cells. In both types, the goal is to destroy all of the cancer cells in the marrow, blood, and other parts of the body using high doses of chemotherapy and/or radiation therapy and then allow replacement blood stem cells to create healthy bone marrow. Learn more about the basics of stem cell and bone marrow transplantation.

Getting care for symptoms and side effects

Leukemia and its treatment often cause side effects. In addition to treatment to slow, stop, or eliminate the disease, an important part of care is relieving a child’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. Any person, regardless of age or type and stage of cancer, may receive palliative care. It works best when palliative care is started as early as needed in the cancer treatment process. Children often receive treatment for the leukemia and treatment to ease side effects at the same time. In fact, patients who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional support and other therapies. Your child may also receive palliative treatments similar to those meant to eliminate the cancer, such as chemotherapy, surgery, or radiation therapy. Talk with your child’s doctor about the goals of each treatment in the treatment plan.

Before treatment begins, talk with your child’s health care team about the possible side effects of the specific treatment plan and palliative care options. And during and after treatment, be sure to tell your doctor or another health care team member if your child is experiencing a problem so it can be addressed as quickly as possible. Learn more about palliative care.

Remission and the chance of recurrence

A remission is when leukemia cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED. 

A remission may be temporary or permanent. This uncertainty causes many people to worry that the leukemia will come back. While many remissions are permanent, it’s important to talk with your child’s doctor about the possibility of the disease returning. Understanding your risk of recurrence and the treatment options may help you feel more prepared if the leukemia does return. Learn more about coping with the fear of recurrence.

If the ALL recurs, a cycle of testing will begin again to learn as much as possible about the recurrence. After testing is done, you and your child’s doctor will talk about treatment options. Often the treatment plan will include the treatments described above such as chemotherapy, radiation therapy, and/or stem cell transplantation but they may be used in a different combination or given at a different pace. Your child’s doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent cancer. Just as for newly diagnosed patients, clinical trials typically offer the best chance of cure. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

If the ALL recurs, treatment depends on many factors, including the type of treatment the child received originally, the length of time between the initial diagnosis and the recurrence, and whether leukemia cells are found in the bone marrow, CSF, testicles, or in more than one of these sites when it recurs.

When ALL recurs, patients and their families often experience emotions such as disbelief or fear. Families are encouraged to talk with their health care team about these feelings and ask about support services to help them cope. Learn more about dealing with cancer recurrence.

If treatment fails

Although treatment is successful for the majority of children with ALL, sometimes it is not. If a child’s leukemia cannot be cured or controlled, this is called advanced or terminal leukemia. This diagnosis is stressful, and advanced cancer may be difficult to discuss. However, it is important to have open and honest conversations with your child’s doctor and health care team to express your family’s feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families.

Parents or guardians are encouraged to think about where the child would be most comfortable: at home, in a home-like setting elsewhere, in the hospital, or in a hospice environment. Hospice care is a type of palliative care for people who are expected to live less than six months. It is designed to provide the best possible quality of life for people who are near the end of life.  Nursing care and special equipment can make staying at home a workable alternative for many families. Some children may be happier if they can arrange to attend school part-time or keep up other activities and social connections. The child’s health care team can help parents or guardians decide on an appropriate level of activity. Making sure a child is physically comfortable and free from pain is extremely important as part of end-of-life care. Learn more about caring for a terminally ill child and advanced cancer care planning.

The death of a child is an enormous tragedy, and families may need support to help them cope with the loss. Pediatric cancer centers often have professional staff and support groups to help with the process of grieving. Learn more on grieving the loss of a child.

The next section in this guide is About Clinical Trials and it offers more information about research studies that are focused on finding better ways to care for people with cancer. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Lymphoblastic - ALL - Childhood - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. To see other pages, use the menu on the side of your screen.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for children with ALL. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. In fact, every drug that is now approved by the U.S. Food and Drug Administration (FDA) was previously tested in clinical trials.

Many clinical trials are focused on new treatments, evaluating whether a new treatment is safe, effective, and possibly better than the current (standard) treatment. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment. Children who participate in clinical trials are often among the first to receive new treatments before they are widely available. New treatments are commonly the best available therapy modified in ways that may bring about a better result. However, there is no guarantee that the new treatment will be safe, effective, or better than a standard treatment.

There are also clinical trials that study new ways to ease symptoms and side effects during treatment and manage the late effects that may occur after treatment. Talk with your child’s doctor about clinical trials regarding side effects. In addition, there are ongoing studies about ways to prevent the disease.

Deciding to join a clinical trial

People decide to participate in clinical trials for many reasons. For most patients, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients and their families are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other patients volunteer for clinical trials because they know that these studies are the only way to make progress in treating children with ALL. Even if they do not benefit directly from the clinical trial, their participation may benefit future children with ALL.

Sometimes people have concerns that, in a clinical trial, their child may receive no treatment by being given a placebo or a “sugar pill.” The use of placebos in cancer clinical trials in this way is rare overall and not done at all in childhood cancer research. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, parents and children must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that patients participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trial before it ends. 

Finding a clinical trial

Research through clinical trials is ongoing for all types of cancer. For specific topics being studied for leukemia, learn more in the Latest Research section.

Cancer.Net offers a lot of information about cancer clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of cancer.

In addition, this website offers free access to a video-based educational program about cancer clinical trials, located outside of this guide.

The next section in this guide is Latest Research and it explains areas of scientific research currently going on for this type of cancer. Or, use the menu on the side of your screen to choose another section to continue reading this guide.    

Leukemia - Acute Lymphoblastic - ALL - Childhood - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will read about the scientific research being done now to learn more about this type of cancer and how to treat it. To see other pages, use the menu on the side of your screen.

Doctors are working to learn more about ALL, how to best treat it, and how to provide the best care to children diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your child’s doctor about the diagnostic and treatment options best for your child.

  • Monitoring leukemia recurrence. New methods for detecting small numbers of leukemia cells that can’t be seen under a microscope were introduced in the 1990s. These techniques are now being used to detect minimal residual disease (MRD) after remission. There are times when measurements of MRD, in blood or bone marrow samples, will be used to determine your child’s risk level and treatment. Research is ongoing to determine the level of MRD, measured at specific time point, that affects the rate of recurrence. Currently, researchers are studying the relationship between the biology of the leukemia cells and these measurements. 

  • New treatments. Finding new ways to treat leukemia are important areas of research. New drugs to kill leukemia cells, such as the T-cell-specific drug nelarabine (Arranon) and the antibody epratuzumab (LymphoCide) are being studied and may improve the cure rate for children with ALL in the future. Other new treatments—antibodies, chemotherapy, and other biologically active treatments—are being studied with the hope that they will increase the cure rate and/or decrease the likelihood of side effects.

  • Palliative care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current childhood ALL treatments in order to improve patients’ comfort and quality of life.

Looking for More About the Latest Research?

If you would like additional information about the latest areas of research regarding childhood ALL, explore these related items that take you outside of this guide:

  • To find clinical trials specific to your diagnosis, talk with your child’s doctor or search online clinical trial databases now.

  • Review research announced at recent scientific meetings or in ASCO’s peer-reviewed journals.

  • Visit ASCO’s CancerProgress.Net website to learn more about the historical pace of research for childhood cancer. Please note this link takes you to a separate ASCO website. 

  • Visit the website of the Conquer Cancer Foundation to find out how to help support research for every cancer type. Please note this link takes you to a separate ASCO website.

The next section in this guide is Coping with Side Effects and it offers some guidance in how to cope with the physical, emotional, and social changes that cancer and its treatment can bring. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Lymphoblastic - ALL - Childhood - Coping with Side Effects

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will find out more about steps to take to help cope with physical, social, and emotional side effects. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu on the side of your screen.

Fear of treatment side effects is common after a diagnosis of leukemia, but it may help to know that preventing and controlling side effects is a major focus of your child’s health care team. This is called palliative care, and it is an important part of the overall treatment plan, regardless of the stage of disease.

There are possible side effects for every cancer treatment, but patients don’t experience the same side effects when given the same treatments for many reasons. That can make it hard to predict exactly how your children will feel during treatment.  Common side effects from each treatment option for ALL are described in detail within the Treatment Options section. Learn more about the most common side effects of different treatments, along with ways to prevent or control them. Side effects depend on a variety of factors, including the classification, the length and dosage of treatment(s), and your child’s overall health.

Talking with your health care team about side effects

Before treatment begins, talk with your child’s doctor about possible side effects of each type of treatment your child will be receiving. Ask which side effects are most likely to happen, when they are likely to occur, and what can be done to prevent or relieve them.

And, ask about the level of caregiving your child may need during treatment and recovery, as family members and friends often play an important role in the care of a child with ALL. Learn more about caregiving.

In addition to physical side effects, there may be emotional and social effects as well. Patients and their families are encouraged to share their feelings with a member of their health care team who can help with coping strategies, including concerns about managing the cost of your child’s medical care

During and after treatment, be sure to tell the health care team about the side effects your child experiences, even if you feel they are not serious. Sometimes, side effects can last beyond the treatment period, called a long-term side effect. A side effect that occurs months or years after treatment is called a late effect. Treatment of both types of effects is an important part of survivorship care. Learn more by reading the Follow-up Care section of this guide or talking with your child’s doctor.

The next section in this guide is Follow-up Care and it explains the importance of check-ups after cancer treatment is finished. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Lymphoblastic - ALL - Childhood - Follow-Up Care

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will read about your child’s medical care after cancer treatment is finished and why this follow-up care is important. To see other pages, use the menu on the side of your screen.

Care for children diagnosed with cancer doesn’t end when active treatment has finished. Your child’s health care team will continue to check to make sure the cancer has not returned, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children treated for cancer, including ALL, should have life-long, follow-up care.

This plan may include regular physical examinations and/or medical tests to monitor your child’s recovery for the coming months and years. Patients should receive follow-up care regularly to monitor for the possible side effects listed above, as well as liver disease from chemotherapy or transfusion-related infection (both very rare) and bone health.

At first, check-ups will occur often. Then over time, these appointments will become more spread apart. Your child’s doctor can recommend the necessary screening tests. Follow-up care should address your child’s quality of life, including any developmental or emotional concerns.

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence. Cancer recurs because small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms.

During follow-up care, a doctor familiar with your child’s medical history can give you personalized information about the risk of recurrence. Your doctor will also ask specific questions about your child’s health. Some children may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of cancer originally diagnosed and the types of treatment given.

Managing long-term and late side effects of childhood cancer

Sometimes, side effects may linger beyond the active treatment period. These are called long-term side effects. In addition, other side effects called late effects may develop months or even years afterwards. Late effects can occur almost anywhere in the body and include physical problems, such as heart and lung problems and second cancers, and emotional and cognitive (memory, thinking, and attention) problems, such as anxiety, depression, and learning difficulties.

Based on the type of treatment your child received, the doctor will recommend what examinations and tests are needed to check for late effects. The possible long-term side effects associated with specific treatments are listed in the table below:

Type of Treatment

Possible Late Effects

Chemotherapy with cyclophosphamide (Cytoxan, Neosar)

Secondary cancers

Infertility (the inability to have children)

Chemotherapy with types of drugs called anthracyclines, such as doxorubicin (Adriamycin) or daunorubicin (Cerubidine)

Heart problems

Radiation therapy if the cancer has spread to the brain

Hormone problems affecting growth and metabolism

Secondary cancers

Infertility

Learning problems

High-dose chemotherapy or spinal fluid injections of chemotherapy like methotrexate (multiple brand names) and cytarabine (Cytosar-U)

Learning problems

 

Organ/Tissue Affected

Type of Treatment

Possible Late Effects

Any tissue

Radiation

Benign and malignant (cancerous) tumors

Bone marrow

Chemotherapy with cyclophosphamide (Cytoxan, Neosar) and/or etoposide (VePesid, Toposar)

Abnormal development of blood cells in the bone marrow (myelodysplasia); acute myeloid leukemia

Bones

Corticosteroids: Prednisone, Dexamethasone); Methotrexate

Weak bones (osteopenia, osteoporosis); Damage to bone joints (avascular necrosis)

Brain

Brain radiation

High-dose chemotherapy or spinal fluid injections of chemotherapy like methotrexate (multiple brand names) and cytarabine (Cytosar-U)

Problems with thinking skills affecting learning, attention,

Heart

Chemotherapy with types of drugs called anthracyclines, such as doxorubicin (Adriamycin) or daunorubicin (Cerubidine)

Weakening of heart muscle (cardiomyopathy)

Kidney

Methotrexate

Reduced kidney function (usually short term effect seen  during therapy)

Liver

Methotrexate

Liver inflammation (usually short term effect during therapy)

Nerves (peripheral)     

Vincristine

Motor nerve weakness, sensory nerve injury causing tingling and numbness

Pituitary gland

Brain radiation

Low levels of hormones important in growth, puberty and weight control

Ovaries

Cyclophosphamide

Depletion of egg follicles; Infertility (difficulty becoming pregnant)

 

Testes

Cyclophosphamide

Depletion of sperm count; Infertility (difficulty fathering children)

Follow-up care should address your child’s quality of life, including any developmental or emotional concerns.

The Children's Oncology Group (COG) has studied the physical and psychological effects that childhood cancer survivors face. Based on these studies, COG has created recommendations for long-term follow-up care for childhood, adolescent, and young adult cancer survivors that can be found on a separate website: www.survivorshipguidelines.org.

Keeping a child’s personal health record

You are encouraged to organize and keep a personal record of the child’s medical information. The doctor will help you create this. That way, as the child enters adulthood, he or she has a clear, written history of the diagnosis, the treatment given, and the doctor’s recommendations about the schedule for follow-up care. ASCO offers forms to help create a treatment summary to keep track of the cancer treatment your child received and develop a survivorship care plan once treatment is completed.

Some children continue to see their oncologist, while others transition back to the general care of their family doctor or another health care professional. This decision depends on several factors, including the type and classification of cancer, side effects, health insurance rules, and your family’s personal preferences. Talk with your health care team about your child’s ongoing medical care and any concerns you have about his or her future health.

If a doctor who was not directly involved in your child’s cancer care will lead the follow-up care, be sure to share the cancer treatment summary and survivorship care plan forms with him or her, as well as all future health care providers. Details about the specific cancer treatment given are very valuable to the health care professionals who will care for your child throughout his or her lifetime.

The next section in this guide is Survivorship and it describes how to cope with challenges in everyday life after a cancer diagnosis. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Lymphoblastic - ALL - Childhood - Survivorship

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will read about how to cope with challenges in everyday life after your child’s cancer diagnosis. To see other pages, use the menu on the side of your screen.

What is survivorship?

The word survivorship means different things to different people, but it often describes the process of living with, through, and beyond cancer. In some ways, survivorship is one of the most complex aspects of the cancer experience because it is different for every patient and his or her family.

After active cancer treatment ends, children and their families may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a cancer diagnosis. Other families stay very anxious about their child’s health and become uncertain of how to cope with everyday life.

One source of stress may occur when frequent visits to the health care team end following treatment. Often, relationships built with the cancer care team provide a sense of security during treatment, and children and their families miss this source of support. This may be especially true as new worries and challenges surface over time, such as any late effects of treatment, educational issues, emotional challenges, sexual development and fertility concerns, and/or financial issues.

Every family faces different concerns and challenges. With any challenge, a good first step is being able to recognize each fear and talk about it. Effective coping requires:

  • Understanding the challenge your family is facing,

  • Thinking through solutions,

  • Asking for and allowing the support of others, and

  • Feeling comfortable with the course of action your family chooses.

It may be helpful to join an in-person support group or online community of childhood cancer survivors. Support groups also exist for parents of children diagnosed with cancer. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of your health care team, individual counseling, or asking for assistance at the learning resource center of the center where your child received treatment.

Changing role of caregivers

Parents, other family members, and friends may also go through periods of transition. A caregiver plays a very important role in supporting a child diagnosed with cancer, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to a child’s cancer diagnosis will become much less or come to an end as your child gets older. Family counselors at pediatric cancer centers can help with this transition. You can also learn more about adjusting to life after caregiving in this article.

Healthy living after cancer

Survivorship often serves as a strong motivator to make positive lifestyle changes, often for the family as a whole. 

Children who have had cancer can enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, maintaining a healthy weight, eating well, managing stress, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child’s needs. Learn more about making healthy lifestyle choices.

As they get older, survivors should carefully monitor their level of functioning and level of stress, and they may need counseling if they have any problems. It is important that children who have trouble with school have neuropsychological testing (testing of thinking skills by a psychologist) to find the cause. Based on the results, the psychologist can advise teachers about changes that can be made in the classroom or teaching plan to help the child learn. Survivors should also be evaluated for bone or joint pain that may result from bone cell death caused by cancer treatments that reduce blood flow in bone joints. The Children’s Oncology Group provides recommendations for follow-up care.

Childhood cancer survivors should also think about the choices available for health insurance when considering their follow-up plan. This Cancer.Net article outlines the basics of Cancer and Affordable Care Act.

In addition, it is important that your child has recommended medical check-ups and tests (see Follow-up Care) to take care of his or her health. Cancer rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, family or individual counseling, nutritional planning, and/or educational assistance. The goal of rehabilitation is to help survivors and their families regain control over many aspects of their lives and remain as independent and productive as possible.

Talk with your doctor to develop a survivorship care plan that is best for your child’s needs.

Looking for More Survivorship Resources?

For more information about cancer survivorship, explore these related items. Please note these links will take you to other sections of Cancer.Net:

  • Survivorship Resources: Cancer.Net offers a lot of information and resources to help survivors cope, including specific sections for children, teens, and young adults. There is also a main section on survivorship for people of all ages.

  • ASCO Answers Cancer Survivorship Guide: This 44-page booklet (available as a PDF) can help with the transition into life after treatment. It includes blank treatment summary and survivorship care plan forms.

  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about childhood cancer survivorship.

The next section offers Questions to Ask the Doctor to help start conversations with your child’s cancer care team. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Lymphoblastic - ALL - Childhood - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will find some questions to ask your doctor or other members of your health care team, to help you better understand your child’s diagnosis, treatment plan, and overall care. To see other pages, use the menu on the side of your screen.

Talking often with the doctor is important to make informed decisions about your child’s health care. These suggested questions are a starting point to help you learn more about your child’s cancer care and treatment. You are also encouraged to ask additional questions that are important to you and your family. You may want to print this list and bring it to your child’s next appointment, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your child’s care.

Questions to ask after getting a diagnosis

  • What type of leukemia does my child have?

  • Can you explain my child’s pathology report (laboratory test results) to me?

  • Will more tests be needed to confirm the diagnosis?

  • What are the results of the analysis of the spinal fluid? What does this mean?

  • What are the results of the bone marrow aspiration? What does this mean?

  • What are the results of the cytogenetic studies done? What does this mean?

Questions to ask about choosing a treatment and managing side effects

  • What are the treatment options?

  • What is the goal of each treatment? Is it to eliminate the cancer, help my child feel better, or both?

  • What clinical trials are open to my child? Where are they located, and how do I find out more about them?

  • What treatment plan do you recommend? Why?

  • Who will be part of my child’s health care team, and what does each member do?

  • Who will be coordinating my child’s overall treatment?

  • What are the possible side effects of this treatment, both in the short term and the long term?

  • What can I do to protect my child from infection during and after treatment?

  • When should I call the doctor or hospital if there is a problem while at home with my child?

  • How will this treatment affect my child’s daily life? Will he or she be able to attend school and perform his or her usual activities?

  • Could this treatment affect my child’s ability to become pregnant or have children in the future? If so, should I talk with a fertility specialist before treatment begins?

  • If I’m worried about managing the costs related to my child’s cancer care, who can help me with these concerns?

Questions to ask about planning follow-up care

  • What follow-up tests will my child need, and how often will he or she need them?

  • Are there blood tests or check-ups that can be done closer to home?

  • What long-term side effects or late effects are possible based on the treatment my child received?

  • How do I get a treatment summary and survivorship care plan to keep in my personal records?

  • What survivorship support services are available to my child? To my family?

  • Whom should I call for questions or problems?

The next section in this guide is Additional Resources, and it offers some more resources on this website beyond this guide that may be helpful to you. Or, use the menu on the side of your screen to choose another section to continue reading this guide.  

Leukemia - Acute Lymphoblastic - ALL - Childhood - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 07/2015

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about cancer care and treatment. This is the final page of Cancer.Net’s Guide to Childhood Acute Lymphoblastic Leukemia (ALL). To go back and review other pages, use the menu on the side of your screen.

Cancer.Net includes many other sections about the medical and emotional aspects of cancer, both for the person diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Beyond this guide, here are a few links to help you explore other parts of Cancer.Net:

This is the end of Cancer.Net’s Guide to Childhood ALL. Use the menu on the side of your screen to select another section to continue reading this guide.