Living as a Survivor of Childhood Leukemia

There are nearly 5,000 new diagnoses of childhood leukemia every year in the United States, making this so-called “rare” disease the most common type of childhood cancer. In fact, childhood leukemia currently accounts for almost one-third of all childhood cancer diagnoses. Thanks to amazing advances in the efficacy of today’s treatment protocols, the majority of children diagnosed with leukemia today can expect to make a full recovery. The 5-year survival rates for the two main forms of leukemia—Acute lymphocytic (lymphoblastic) leukemia (ALL) and Acute myelogenous leukemia (AML)—are greater than 85% and about 60-70% respectively.

However, achieving remission and then joining the ranks of the “survivors” still requires that children undergo months, even years, of intensive chemotherapy. And despite the amazing advances in chemotherapy, it is still involves powerful drugs that can have serious and severe short- and long-term health risks. Indeed, one of the goals of researchers today is not only to ensure that no child dies of this dreaded disease, but also to find safer and less toxic treatment options. So while families are so focused on the short-term goal of survival, it is important to remain focused on both short- and long-term survivorship issues to help mitigate physical and emotional side effects.

Short Term Survivorship Issues

Perhaps the most critical step in monitoring and maintaining your child’s physical health during the first 2-5 years after treatment is ensuring that your child undergoes routine cancer screenings to watch for a relapse or recurrence of the cancer. These screenings are also useful for monitoring short- and long-term side effects of the chemotherapy. Although the schedule of screenings is different for each child, it usually consists of follow-up visits once a month or so for the first year after treatment, then decreasing in frequency after that. It is unusual for leukemia to return once a child has been cancer-free for 2 years or so, but most oncologists prefer to continue routine monitoring for at least five years.

While many parents are expecting concerns about their child’s physical health to predominate the immediate aftermath of treatment, most are surprised at the unexpected emotional and social issues that often arise after treatment. Challenges such as establishing a normal routine, going back to school, and reestablishing friendships and social connections often prove as difficult, or even more difficult, as the physical issues. Specific emotional issues vary depending on the age of the child and the duration of treatment, but luckily, most of these challenges are only temporary, and can be overcome with patience, encouragement, and lots of support from family, teachers, and even counsellors. Many cancer centers offer support services, in fact, to help families make this potentially difficult transition easier.

Long Term Survivorship Issues

In the long term, survivorship issues are usually focused on potential health concerns resulting from the toxicity of the chemotherapy treatments. Understanding the potential for long-term health problems is the first step to identifying and addressing these concerns as quickly as possible. The most common long-term health concerns among adult survivors of childhood leukemia include:

• Secondary cancers: Chemotherapy has been linked to the development of other cancers in adulthood; for instance, treatment for ALL carries a small risk of developing AML as an adult.
• Heart, lung, and bone problems: Some chemotherapy drugs can cause long-term damage to the heart and/or lungs, usually a higher risk for patients with ALL than AML. Steroid-based treatments have been linked to the development of osteoporosis.
• Developmental delays/learning problems: Radiation therapy and some chemotherapy drugs have been linked to development delays in young children; therefore, most oncologists will try to avoid the use of radiation in young children whenever possible.
• Growth delays: Some types of cancer treatments can impact a child’s natural growth.
• Fertility concerns: Some chemotherapy drugs have been linked to problems related to sexual development and reproduction.

More about Childhood Leukemia Cancers:

• About Childhood Leukemia Cancer – Detection and Diagnosis
• Causes, Risk Factors, and Prevention of Childhood Leukemia Cancer
• What are the signs and symptoms of Childhood Leukemia Cancer?
• Childhood Leukemia Cancer Treatment
• What is the expected life span of Childhood Leukemia Cancer?
• After Treatment – Living as a Childhood Leukemia Cancer Survivor

Learn More About the Different Types of Childhood Cancers:

• Childhood Brain Tumor Cancer (Brain Stem Tumors)
• Spinal Cord Tumor Cancer
• Childhood Neuroblastoma Cancers
• Childhood Hodgkin Lymphoma Cancers
• Non-Hodgkin Lymphoma Cancers
• Wilms tumor (Kidney Tumors)
• Rhabdomyosarcoma
• Retinoblastoma
• Bone cancer (including osteosarcoma and Ewing sarcoma)
• Leukemia Cancers: Acute lymphocytic (lymphoblastic) leukemia (ALL) Acute myelogenous leukemia (AML); Juvenile myelomonocytic leukemia (JMML)
• Hepatoblastoma (Liver Cancer)
• Rhabdoid Tumors

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

• Who We Are
• How to Get Involved
• How to Donate

Childhood leukemia is often pointed to as childhood cancer research’s success story. Just 60 years ago, almost no child with leukemia survived more than a few years, but today, thanks to new discoveries and advances in treatment, 90% of children with the most common type of leukemia will survive. That progress is certainly worth celebrating, but these statistics don’t tell the whole story. Let’s take a closer look at what these numbers really mean for children with leukemia.

What We Mean by “Survival”

When we talk about long-term survival for any childhood cancer, including leukemia, it is important to understand that oncologists and cancer researchers look at the five-year survival rate, or how many children remain cancer-free five years after the end of treatment. In general, children who are still cancer-free after five years are considered “cured” of the disease. 

Thanks to advances in treatment methods, the five-year survival rate for childhood leukemia has greatly improved over the past several decades. The five-year survival rate for acute lymphoblastic leukemia (ALL) is now 90%. The five-year survival rate for acute myelogenous leukemia (AML) is lower, at 60-70%. Moreover, the rates can vary greatly depending on subtype and other factors.

These numbers do not, however, provide a specific prognosis for any given child. They are only averages compiled from treated cases of childhood leukemia across the country. Your child’s prognosis and long-term outlook after treatment will be heavily dependent on your child’s diagnosis, response to treatment, and general health.

Prognosis Factors for Childhood Leukemia

Prognosis factors are a series of measurements that your child’s oncology team may use to estimate the degree of risk posed by the cancer and to determine the most promising treatment plan. There are several key prognosis factors that oncologists use when dealing with a leukemia diagnosis. In general, these prognosis factors are the same for ALL and AML, but they do not seem to play as great a role in either guiding treatment or predicting outcomes for AML.

• Risk group: A cancer can be classified as standard risk, high risk, or very high risk. These groupings help determine the intensity of treatment and may impact long-term prognosis.
• Age at diagnosis: For B- cell ALL, children between the ages of 1 and 9 seem to have a more positive prognosis than children under the age of 1 or over the age of 10. Age does not appear to be a prognosis factor in T-cell ALL and AML.
• Initial white blood cell count: Very high white blood cell counts at diagnosis is generally considered high risk or very high risk.
• Subtype: There are many subtypes of leukemia, and some tend to be less aggressive and more responsive to treatment than others. For example, children diagnosed with pre-B, common, or early pre-B-cell ALL seem to have a more positive prognosis than children with mature B-cell leukemia, although B-cell ALL can also have a more positive prognosis if treated with intensive chemotherapy.
• Gender: In general, girls seem to have a slightly better prognosis than boys, though this gap has shrunk in recent years thanks to today’s advanced treatment options.
• Race/ethnicity: African-American and Hispanic children may have a slightly worse prognosis than other ethnicities. 
• Spread to other organs: If the leukemia has spread into the fluid around the brain and spinal cord, and the testicles in boys, it is usually classified as high-risk or very high-risk.
• Number of chromosomes and chromosome translocations: Some studies have begun to link longer-term prognosis with the number of chromosomes within the leukemia cells, as well as with translocations between specific chromosomes (when part of a chromosome breaks off and attaches to another).
• Response to treatment: The initial reduction of leukemia cells in the bone marrow during the first one to two weeks of chemotherapy may help determine long-term prognosis. If the leukemia does not respond as expected in this time frame, most oncologists will move to a more intensive treatment protocol.

Life for Childhood Leukemia Survivors

For several years after finishing treatment for leukemia, children will need to have regular exams to check for signs that the cancer has returned, as well as to monitor for side effects of treatment. Some side effects may appear during treatment or soon after the end, while others might not surface until adulthood.

Side effects of childhood leukemia treatment can include:

• Social and emotional challenges
• Developmental delays/learning problems
• Growth delays
• Secondary cancers
• Heart, lung, and bone problems
• Fertility problems

While all childhood leukemia survivors have a greater risk of developing certain health problems as a result of their treatment, most side effects can be managed with proper medical care. It’s important that, even as adults, survivors continue to have regular health checks and are upfront with their healthcare providers about their cancer history.

Kaydence’s Story: Surviving ALL

Kaydence is no ordinary 7-year-old. She’s a talented budding artist with a penchant for donkeys, and she’s a survivor of acute lymphoblastic leukemia.

There was nothing ordinary about Kaydence’s cancer journey, either. She was found to have two rare chromosome mutations that classified her cancer as very high risk, and when she didn’t respond to the initial treatment, her parents and treatment team decided to move forward with CAR T-cell immunotherapy, a novel treatment that trains the patient’s own immune cells to target and kill the cancer cells.

It wasn’t an easy road. She spent 10 days on life support fighting septic shock two weeks after diagnosis. She went into anaphylactic shock after her T-cell infusion. She had to re-learn how to stand, walk, use her hands and fingers, and go to the toilet. But despite all the setbacks, Kaydence’s treatment was successful. She has been in remission since March 2019. Her immune system is still suppressed, so she has to take extra precautions to make sure she doesn’t get sick, and her doctors continue to monitor her closely for side effects or any signs of her cancer returning. But for her part, Kaydence is enjoying being her 7-year-old self: painting and crafting, playing with her siblings, and just being a normal kid.

September is Leukemia and Lymphoma Awareness Month. Help kids like Kaydence by making a donation to the American Childhood Cancer Organization to honor their fight during Leukemia Awareness Month. Your gift helps provide educational resources and support programs for children with cancer, survivors, and their families, as well as raise awareness about childhood cancer and the need for more research.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

More about Childhood Leukemia Cancers:

• About Childhood Leukemia Cancer – Detection and Diagnosis
• Causes, Risk Factors, and Prevention of Childhood Leukemia Cancer
• What are the signs and symptoms of Childhood Leukemia Cancer?
• Childhood Leukemia Cancer Treatment
• What is the expected life span of Childhood Leukemia Cancer?
• After Treatment – Living as a Childhood Leukemia Cancer Survivor

What Causes Childhood Leukemia?

Both major types of childhood leukemia—Acute lymphocytic (lymphoblastic) leukemia (ALL) and Acute myelogenous leukemia (AML)—begin in the bone marrow, the soft inner part of the bone where new blood cells are created. As the leukemia cells accumulate inside the bone marrow, they overwhelm the healthy cells, eventually spreading into the blood stream. Thus, leukemia is a blood-based cancer, and must not be confused with other types of childhood cancers that start in other parts of the body and eventually spread into the bone marrow.

Why do some blood cells in children grow into abnormal leukemia cells? In other words, what causes childhood leukemia? Unfortunately, we cannot yet answer that question. We do know that childhood leukemia, like most other childhood cancers, is not caused by environmental or lifestyle factors. Absent these factors, scientists and researchers do not know what causes certain cells within a child’s bone marrow to begin growing and functioning abnormally.

Increasingly, scientists are beginning to believe that many childhood cancers, including leukemia, are linked to mutations—or random, uncontrolled alterations—to the DNA found within normal bone marrow cells. Leukemia may be connected to a specific type of DNA mutation controlling the genes responsible for ensuring that cells divide, grow, replicate, and die properly. Another potential cause of childhood leukemia may be a form of genetic mutation called chromosome translocation, where DNA from one chromosome breaks off and becomes attached to a different chromosome. Again, if this mutation affects oncogenes and/or tumor suppressor genes, it may lead to the development of childhood leukemia or other types of childhood cancer.

What are the risk factors for childhood leukemia?

If it is true that genetic mutations are responsible for most cases of childhood leukemia, it is important to note that these genetic mutations are usually the result of random and unpredictable changes and are not linked to any known or inherited risk. However, there are a few inherited conditions which may result in a higher risk factor for some rare cases of childhood leukemia, such as:

• Inherited syndromes such as Down syndrome (trisomy 21) and Li-Fraumeni syndrome

• Inherited immune system problems such as Ataxia-telangiectasia, Wiskott-Aldrich syndrome, Bloom syndrome, and Schwachman-Diamond syndrome

• Having a sibling with leukemia, especially if the sibling is an identical twin

The one environmental factor that may pose an increased risk of childhood leukemia is exposure to extremely high levels of radiation (such as Japanese survivors of the 1945 atomic bombings). However, scientists are exploring any potential links between childhood leukemia and smaller dosages of radiation (like routine x-rays), as well as chemotherapy and exposure to toxic chemicals.

Can Childhood Leukemia Be Prevented?

Although we don’t yet know definitively what causes childhood cancer, we can say definitely that there is no way to prevent it, or as of right now, screen for it the way we can with many adult cancers. We can hope that as our understanding of the causes of leukemia and other childhood cancers improves, that knowledge brings with it a better understanding of how to detect the disease before it becomes the terrible threat that it poses today.

More about Childhood Leukemia Cancers:

• About Childhood Leukemia Cancer – Detection and Diagnosis
• Causes, Risk Factors, and Prevention of Childhood Leukemia Cancer
• What are the signs and symptoms of Childhood Leukemia Cancer?
• Childhood Leukemia Cancer Treatment
• What is the expected life span of Childhood Leukemia Cancer?
• After Treatment – Living as a Childhood Leukemia Cancer Survivor

Learn More About the Different Types of Childhood Cancers:

• Childhood Brain Tumor Cancer (Brain Stem Tumors)
• Spinal Cord Tumor Cancer
• Childhood Neuroblastoma Cancers
• Childhood Hodgkin Lymphoma Cancers
• Non-Hodgkin Lymphoma Cancers
• Wilms tumor (Kidney Tumors)
• Rhabdomyosarcoma
• Retinoblastoma
• Bone cancer (including osteosarcoma and Ewing sarcoma)
• Leukemia Cancers: Acute lymphocytic (lymphoblastic) leukemia (ALL) Acute myelogenous leukemia (AML); Juvenile myelomonocytic leukemia (JMML)
• Hepatoblastoma (Liver Cancer)
• Rhabdoid Tumors

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer. 

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

• Who We Are
• How to Get Involved
• How to Donate

Childhood Leukemia

Nearly one-third of all children and teens with cancer are diagnosed with childhood leukemia, making this form of childhood cancer by far the most common. Childhood leukemia is a cancer of the blood. It begins in the bone marrow, the soft interior of the bones responsible for the development of new blood cells. Leukemia cells in the bone marrow replicate more quickly than healthy cells, and do not die at the proper time, and eventually begin to crowd out healthy cells. As this happens, the cancerous cells enter the blood stream and quickly move around the body. As the leukemia cells invade other organs, they begin to impact the ability of those organs to function normally.

There are two main types of acute childhood leukemia: ALL and AML:

• Acute lymphocytic (lymphoblastic) leukemia (ALL): ALL is the most common form of childhood leukemia, accounting for approximately 75% of leukemia diagnoses. ALL develops from immature lymphocytes, which when healthy grow into white blood cells responsible for fighting infections and bacteria. Most ALL cases involve B cells, the lymphocytes responsible for making the antibodies that the body uses to fight viruses; however, some cases of ALL originate in T cells, which are responsible for fighting infection themselves.
• Acute myelogenous leukemia (AML): Approximately 25% of childhood leukemia cases are AML, also known as acute myeloid leukemia, acute myelocytic leukemia, or acute non-lymphocytic leukemia. AML originates in myeloid cells that are responsible for developing non-lymphocytic white blood cells, red blood cells, and platelets.

Juvenile myelomonocytic leukemia (JMML) is a very rare type of childhood leukemia that is usually diagnosed in children under the age of 4. Like AML, it originates in myeloid cells, but develops much more slowly than AML (yet still grows more rapidly than chronic leukemia common in adults). Chronic (slow-growing) leukemias such as chronic myelogenous leukemia (CML) and chronic lymphocytic leukemia (CLL) are extremely rare in children.

Detection and Diagnosis of Childhood Leukemia

Children are usually diagnosed with childhood leukemia once it has entered the blood stream and spread to other parts of the body, leading to visible symptoms of illness as the leukemia cells prevent the normal functioning of various organs. The most common symptoms of childhood leukemia are fatigue, headaches, paleness, fever, and infection. Of course, these are similar to symptoms of many routine childhood ailments; however, your child’s pediatrician may recognize them as potential warning signs of leukemia if they persist, reoccur frequently, and/or gradually worsen over time despite treatment. Easy bruising and bleeding is also a potential symptom of leukemia.

Should your child’s pediatrician believe that leukemia may be the source of your child’s symptoms, he or she will recommend a blood test, which can indicate the potential presence of leukemia cells in the blood. The blood test will determine how many cells of each type (red blood cells, white blood cells, and platelets) are present in your child’s blood. An abnormally high level of white blood cells and a corresponding low level of red blood cells and platelets may indicate leukemia. A technician will also examine the blood sample under a microscope to look for abnormalities in the blood cells themselves.

Should this blood test indicate the potential presence of leukemia in your child’s blood stream, your child will be referred to an oncologist for full diagnostic testing. The first step in a leukemia diagnosis is a bone marrow aspiration and biopsy. This test is done to determine if leukemia cells are present in the bone marrow itself. Usually performed together, a bone marrow aspiration involves removing a small amount of bone marrow through a syringe inserted through the bone via a thin, hollow needle. Then, using a slightly larger needle, a small piece of the bone together with some marrow is removed. The biopsy involves examining the bone and the marrow samples under a microscope to detect the presence of leukemia cells.

If your child is diagnosed with leukemia, his or her oncology team will begin a series of additional tests and scans in order to classify and stage the leukemia. These tests will help the oncologists determine the appropriate method of treatment. These additional tests may include:

• Lumbar puncture (otherwise known as a spinal tap) in order to determine if there are leukemia cells in the cerebrospinal fluid
• Chest x-ray: to detect the potential for an enlarged thymus or lymph nodes, as well as to determine if there is any pneumonia and/or lung infection
• CT scan or MRI: to detect the presence of leukemia in other organs such as the lymph nodes, spleen, liver, brain, and/or spinal cord
• PET scan: may be helpful in determining the extent to which leukemia cells have spread throughout the body

More about Childhood Leukemia Cancers:

• About Childhood Leukemia Cancer – Detection and Diagnosis
• Causes, Risk Factors, and Prevention of Childhood Leukemia Cancer
• What are the signs and symptoms of Childhood Leukemia Cancer?
• Childhood Leukemia Cancer Treatment
• What is the expected life span of Childhood Leukemia Cancer?
• After Treatment – Living as a Childhood Leukemia Cancer Survivor

Learn More About the Different Types of Childhood Cancers:

• Childhood Brain Tumor Cancer (Brain Stem Tumors)
• Spinal Cord Tumor Cancer
• Childhood Neuroblastoma Cancers
• Childhood Hodgkin Lymphoma Cancers
• Non-Hodgkin Lymphoma Cancers
• Wilms tumor (Kidney Tumors)
• Rhabdomyosarcoma
• Retinoblastoma
• Bone cancer (including osteosarcoma and Ewing sarcoma)
• Leukemia Cancers: Acute lymphocytic (lymphoblastic) leukemia (ALL) Acute myelogenous leukemia (AML); Juvenile myelomonocytic leukemia (JMML)
• Hepatoblastoma (Liver Cancer)
• Rhabdoid Tumors

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

• Who We Are
• How to Get Involved
• How to Donate