Physical Therapy Guide to Childhood Leukemia
Leukemia, a cancer of blood-forming cells, is the most common cancer diagnosis in children. The exact cause of leukemia is not known. Survival rates of children with the disease have improved in recent years and continue to improve. Physical therapists help children with childhood leukemia maintain strength and function, and reduce some of the effects of cancer treatment.
What is Childhood Leukemia?
Leukemia is a cancer of the blood-forming cells found in the bone marrow, the soft center of most bones, where blood cells are produced. When leukemia is present, the body produces increased numbers of immature blood cells called "blasts." These blasts do not mature correctly; the large number of abnormal, incorrectly maturing cells can crowd out normal cells in the bone marrow. Usually the white blood cells are affected, but other types of blood cells, such as red blood cells or platelets also can be involved. Red blood cells are responsible for delivering oxygen to all the parts of the body. Platelets clot the blood in order to stop bleeding. White blood cells protect us from infections. Having a reduced number of normal cells of any of these specialized blood cells is detrimental to our health. A lack of red blood cells may result in anemia, causing fatigue and difficulty breathing. Low levels of platelets can result in bleeding or easy bruising. Not having enough white blood cells increases the risk of infection. Because leukemia changes the blood, the illness is systemic and affects the whole body. Leukemia accounts for about 30% of all cancers seen in children.
Types of Leukemia
Childhood leukemia is classified into several types described as either acute or chronic. Acute means that the cancer is growing rapidly. Chronic means that it is growing more slowly.
Acute leukemia is more common in children and can be grouped into 3 main types:
- Acute lymphoblastic leukemia (ALL) is commonly diagnosed in young children, most often between the ages of 2 and 4 years. ALL occurs more commonly in boys, and in Hispanic or Caucasian children, and less often among African American children.
- Acute myelogenous leukemia (AML) can develop at any time during childhood, but it is most commonly diagnosed within the first 2 years of life and during teenage years. AML is diagnosed equally across genders and races. AML is also known as acute myeloid leukemia, acute myelocytic leukemia, or acute nonlymphocytic leukemia.
- Hybrid or mixed-lineage leukemia is a rare form of leukemia that has characteristics of both ALL and AML.
- Juvenile myelomonocytic leukemia (JMML) is another rare type of leukemia, and is neither acute nor chronic.
- Chronic myelogenous leukemia (CML) and chronic lymphocytic leukemia (CLL) are 2 chronic forms of leukemia that are rare and more often seen in older children. Information on these less common chronic types of leukemia and other rare childhood leukemia can be found at the American Cancer Society’s website (see link below for the detailed guide).
How Does It Feel?
Children with leukemia may experience:
- Weight loss
- Bone pain
- Bruising or bleeding
- Weakness or fatigue
- Swelling or pain in various parts of the body
As leukemia cells increase in the bone marrow and the normal cells that prevent anemia, bleeding, and infections are decreased, children may become weak, experience fatigue, and generally not feel well. The increased bleeding may cause symptoms, such as bruises, nosebleeds, bleeding gums, or paleness. If the leukemia cells enter other organs, swelling and pain might occur in almost any part of the body. Children typically enjoy activities and play. When any of these symptoms are present and children limit their participation in play, they need to be examined by a medical professional. Some other illnesses may have symptoms similar to leukemia, and health care providers can conduct tests to find the correct diagnosis.
How Is It Diagnosed?
When a child or teenager shows symptoms that could be related to leukemia, a physical examination and a full review of the child's medical history by a health care provider is essential. Parents should share any family history of cancer, the symptoms they have noticed, how long the symptoms have been present, and any risk factors, such as genetic factors or previous treatment with chemotherapy or radiation.
Several tests are used to diagnosis leukemia, including blood tests, bone tests, and spinal fluid tests. The blood sample is evaluated to determine the number of each type of blood cells present (called a complete blood count). The cells' appearance is also examined under a microscope. When leukemia is present in a child, the blood tests often reveal increased numbers of abnormal, immature white blood cells—the above-mentioned "blasts"—and a reduced number of red blood cells.
Additional tests are used to classify the leukemia and to gather more information about the specific genetic makeup of the abnormal cells. These tests may be repeated during treatment to determine how well the child is responding to treatment.
How Can a Physical Therapist Help?
The physical therapist is an important member of the team of health care professionals working with children who have leukemia. The physical therapy goals of treatment for all children include:
- Reducing pain
- Maintaining strength and movement
- Supporting participation in activities as possible during chemotherapy or other treatments
The most common medical treatment for leukemia is chemotherapy. Chemotherapy is given as combinations of several different drugs and can be given in a variety of ways, such as intravenously or in a pill form. Chemotherapy regimens for the ALL type of leukemia usually take about 2 to 3 years. The regimens for the AML type of leukemia take approximately 1 year.
Another possible medical treatment for leukemia is a stem cell transplant (SCT). In this form of treatment, stem cells are given to the child with leukemia either from a sibling, unrelated donor, or possibly from umbilical cord blood. The SCT is used to replace healthy stem cells in the bone marrow.
Children receiving chemotherapy may experience side effects, including nausea; vomiting; hair loss; mouth sores; decreased blood counts; changes in sensation, particularly in the feet; muscle weakness; and fatigue. The effects of the SCT may be similar. The lengthy treatment also may result in weakness and a loss of the ability to participate in activities like other children. Physical therapists will implement ways to modify and encourage play and learning activities to allow continued participation by the child during treatment.
Can This Injury or Condition Be Prevented?
The exact cause of leukemia is not known. Risk factors include both genetic and environmental factors. Syndromes, such as Down syndrome and Li-Fraumeni syndrome, and genetic disorders, such as neurofibromatosis and Fanconi anemia, increase a child’s risk of developing leukemia. Inherited immune-system conditions also increase the risk of leukemia. Siblings of a child who have been diagnosed with leukemia have a slightly increased risk of also developing the disease.
Environmental factors can play a role as well. Exposure to chemotherapy, radiation, including prenatal radiographs, or other chemicals can increase a child’s risk of developing leukemia. Children and adults who received treatment for another type of cancer with certain chemotherapy agents are at an increased risk of developing a second cancer, usually AML.
Real Life Experiences
Lynn was diagnosed with leukemia at the age of 5 after her parents noticed that she appeared pale, was less energetic, and ran frequent fevers. Her pediatrician referred her to a pediatric oncologist, who made the diagnosis and began chemotherapy. Her treatment consisted of a combination of chemotherapy drugs given over the course of 3 years. During the initial phase of her treatment, Lynn's parents noticed that she often asked to be carried instead of walking on her own. When they encouraged her to walk, they found that she occasionally tripped, and dragged her toes. She also complained of funny feelings in her feet that she described as “sparkly” or “tingly,” and did not like to have her feet touched. Her parents reported these symptoms to her physicians, who informed them that Lynn’s symptoms were caused by a chemotherapy-related side effect called peripheral neuropathy. The physicians referred Lynn to physical therapy.
Lynn's physical therapist assessed her strength, balance, sensation, walking gait, and movement skills. She noted that Jill had difficulty heel walking, which was an indication of decreased strength around her ankles. While walking, Lynn's foot could be heard “slapping” the ground. She couldn’t feel light touches to her feet, and when she stood in bare feet, her parents could see that her feet rolled inward. Lynn was unable to jump with both feet at the same time, or to land from a jump without losing her balance unless someone held her hands. She needed to use her arms to pull on a surface to get up from the floor. In order to move up or down steps, Lynn needed to use a handrail and have help from the physical therapist.
Lynn’s physical therapist designed treatment sessions that included activities during play that promoted stretching and strengthening of her lower leg muscles. She created a variety of fun obstacle courses that got Jill climbing up inclined surfaces, getting up from the floor without assistance, jumping forward, stepping over objects, walking 1 foot in front of the other across stepping-stones, and negotiating steps. Lynn had fun and looked forward to her "play" sessions each week with her new "friend." Her physical therapist instructed Lynn's parents in techniques for stretching at home, daily heel walking, and individualized play activities. Lynn also received orthotics to wear in her shoes to provide support to her growing feet.
Over the course of many months, Lynn made significant progress in physical therapy. She no longer complained of tingling sensations in her feet, and was able to complete all her movements without difficulty, including climbing steps all by herself.
With her physical therapist's approval, Lynn is now able to play with her siblings and friends. When she was discharged from physical therapy, Lynn told her physical therapist, “You were my favorite friend in the hospital because you played with me and made me stronger.”
This story was based on a real-life case. Your case may be different. Your physical therapist will tailor a treatment program to your specific case.
What Kind of Physical Therapist Do I Need?
All physical therapists are prepared through education and experience to treat children with leukemia. However, you may want to consider:
- A physical therapist who is experienced in pediatrics and oncology (cancer). Some physical therapists have a pediatric practice and will work with you and your child in the clinic, home, school, or community environment.
- A physical therapist who is a board-certified clinical specialist or who has completed a residency, fellowship, or training in pediatrics (indicated by PCS or pediatric certified specialist), or a therapist with special training in oncological physical therapy and experience in treating children with leukemia.
- An experienced pediatric physical therapist who also understands the importance of working with other health professionals, who are needed to maximize outcomes for children with leukemia.
You can find physical therapists who have these and other credentials by using Find a PT, the online tool built by the American Physical Therapy Association to help you search for physical therapists with specific clinical expertise in your geographic area.
General tips when you're looking for a physical therapist (or any other health care provider):
- Get recommendations from family and friends or from other health care providers.
- When you contact a physical therapy clinic or home health agency for an appointment, ask about the physical therapists' experience in helping children with cancer.
During your first visit with the physical therapist, be prepared to describe your child's symptoms and motor activities in as much detail as possible, and discuss your goals.
The American Physical Therapy Association (APTA) believes that consumers should have access to information that could help them make health care decisions, and also prepare them for a visit with their health care provider.
APTA has determined that the following articles and website resources provide some of the best scientific evidence on leukemia. The articles report recent research and give an overview of the standards of practice for treatment both in the United States and internationally. The article titles are linked either to a PubMed* abstract of the article or to free access of the full article, so that you can read it or print out a copy to bring with you to your health care provider.
Jervaeus A, Sandeberg M, Johansson E, Wettergren L. Survivors of childhood cancer report high levels of independence five years after diagnosis. J Pediatr Oncol Nurs. 2014;31(5):245–251. Article Summary on PubMed.
Urbanski BL, Lazenby M. Distress among hospitalized pediatric cancer patients modified by pet-therapy intervention to improve quality of life. J Pediatr Oncol Nurs. 2012;29(5):272–282. Article Summary on PubMed.
Gurney JG, Krull KR, Kadan-Lottick N, et al. Social outcomes in the childhood cancer survivor study cohort. J Clin Oncol. 2009;27(14):2390–2395. Free Article.
American Cancer Society. Leukemia in children. Accessed November 6, 2015.
American Cancer Society. Childhood leukemia: detailed guide. Revised April 17, 2015. Accessed November 6, 2015.
Centers for Disease Control and Prevention. Questions and answers about leukemia. Accessed November 6, 2015.
Leukemia and Lymphoma Society. Leukemia. Accessed November 6, 2015.
National Cancer Institute. Childhood cancers. Published May 13, 2015. Accessed November 6, 2015.
* PubMed is a free online resource developed by the National Center for Biotechnology Information (NCBI). PubMed contains millions of citations to biomedical literature, including citations in the National Library of Medicine’s MEDLINE database.
Authored by Regine Lesly Souverain, PT, DPT, board-certified clinical specialist in pediatric physical therapy, and Venita Lovelace-Chandler, PT, PhD, board-certified clinical specialist in pediatric physical therapy. Reviewed by the editorial board.