A Handbook for Families
Acute Lymphoblastic Leukemia
ONCOLOGY SERIES
A Handbook for Families
Acute Lymphoblastic Leukemia
ONCOLOGY SERIES
Acute Lymphoblastic Leukemia
A HANDBOOK FOR FAMILIES
AUTHORS LeighAnna Hutchinson, DNP APRN FNP-BC Brandi O’Dell, MSN RN CPN
CONTENT REVIEWERS APHON Steering Council PARENT REVIEWER Betsey Young
ABOUT THIS COVER
This cover is specially designed for your child to color and personalize. When your child finishes decorating the cover, return it to the clinic or doctor’s office where you received the handbook.
This handbook is published by the Association of Pediatric Hematology/Oncology Nurses (APHON) for educational purposes only. The material has been developed by sources believed to be reliable. The material is not intended to represent the only acceptable or safe treatment of retinoblastoma. Under certain circumstances or conditions, additional or different treatment may be required. As new research and clinical experience expand the sources of information available concerning the treatment of retinoblastoma, adjustments in treatment and drug therapy may be required. APHON makes no warranty, guarantee, or other representation, express or implied, concerning the validity or sufficiency of the treatments or related information contained in this handbook. APHON grants unrestricted permission to photocopy or print the handbook for educational use by the care team or the care team’s institution. The user may not alter content or receive monetary gain from distributing photocopies of this product. This resource may not be translated without written permission from APHON.
Copyright © 2025 by the Association of Pediatric Hematology/Oncology Nurses www.aphon.org
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WHAT IS LEUKEMIA?
Leukemia is a cancer of the blood and bone marrow. The blood cells that are made in the bone marrow include the white blood cells (WBCs), red blood cells (RBCs), and platelets.
WHITE BLOOD CELLS (WBCS) WBCs, also called leukocytes , help to defend the body against infections. Infections can be caused by bacteria, viruses, and fungi. The three different types of WBCs are lymphocytes, granulocytes, and monocytes. Lymphocytes are a type of WBC that develop from the lymphoid cell line and help to fight infections. The three types of lymphocytes are B lymphocytes (B cells), T lymphocytes (T cells), or natural killer cells (NK cells). B cells and T cells help the body by developing antibodies to fight infection. NK cells fight viruses and attack cancer cells. Granulocytes are a type of WBC that develop from the myeloid stem cell. They help destroy infections caused by bacteria. Monocytes are a third type of WBC that are related to granulocytes. Monocytes help fight against bacteria by surrounding and digesting them. They also help lymphocytes identify germs. RED BLOOD CELLS (RBCS) RBCs carry oxygen to all of the cells in the body. If the number of RBCs is low, a child may look pale and feel tired and have headaches, dizziness, or a fast heartbeat. The number of RBCs is measured by a blood test measuring the hemoglobin level. A low level of RBCs is called anemia. PLATELETS Platelets are the blood-clotting cells that are needed to stop bleeding and to form a clot. If the level of platelets in the blood is low, there is an increased chance of bleeding and bruising. A rash that looks like small red-purple freckles also may be seen. These freckles are called petechiae. A low level of platelets is called thrombocytopenia . Leukemia occurs as a result of abnormal growth of immature blood cells. These cells are called blast cells . These immature cells grow out of control, crowd out the normal cells (WBCs, RBCs, and platelets) in the bone marrow, and eventually spill out into the bloodstream. As a result, leukemia may be found in other parts of the body such as the lymph nodes, liver, spleen, central nervous system (which is the brain and spinal cord), testicles, skin, and other organs.
NORMAL
LEUKEMIA
RED BLOOD CELLS
PLATELETS
WHITE BLOOD CELLS
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WHAT ARE THE TYPES OF LEUKEMIA?
There are several different types of leukemia, with two main classifications based on how quickly cells grow: acute leukemia and chronic leukemia. Acute leukemia develops from young, immature cells called blasts . The blast cells divide frequently, causing the leukemia cells to grow and accumulate very quickly. The main types of acute leukemia are: Acute lymphoblastic leukemia (ALL)—a cancer that occurs in the lymphocytes, affecting either the T or B lymphocytes. This is the most common type of childhood leukemia. Acute myeloid leukemia (AML)—a cancer that occurs in the myeloid cells, usually affecting the WBCs; however, in some cases, it may involve the RBCs or platelets. A less common kind of cancer— biphenotypic leukemia —has features of both ALL and AML. Chronic leukemia develops more slowly and occurs in more mature, abnormal cells. This type of leukemia is seen more often in adults than in children. The two main types of chronic leukemia are chronic myelogenous leukemia (CML) and chronic lymphoblastic leukemia (CLL). Treatment for chronic leukemia is very different than treatment for acute leukemia, and it is not discussed in this booklet.
HOW COMMON IS ACUTE LYMPHOBLASTIC LEUKEMIA (ALL)?
ALL is the most common cancer seen in children. It often is seen in young children and young adults, with most children diagnosed between 2 and 5 years of age. About 6,660 people develop ALL each year. Caucasian children are more likely to have ALL than African American children, and the likelihood is highest in Hispanic children. ALL is more common in boys than in girls. About 90% of children who develop ALL will survive. You may visit the Children’s Oncology Group website (listed in the Resources section) for more information on who may be diagnosed with ALL. Leukemia involving B-cell lymphocytes is the most common. Among children with ALL, 85% will have B-cell leukemia. There are three types of B-cell ALL:
Early pre-B (very immature B cells) Pre-B (immature B cells) B-cell (mature B cells, also called Burkitt’s lymphoma).
Early pre-B and pre-B ALL are treated in the same way. Burkitt’s lymphoma is only seen in 1%–2% of children with ALL; this type of ALL requires different, more intensive treatment that is given over a shorter period of time. Leukemia involving the T-cell lymphocyte is seen in about 15% of childhood leukemia. At the time the diagnosis is made, children with T-cell ALL have a higher WBC count and/or a mass in the chest. Most commonly, T-cell ALL affects older children and boys.
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WHAT CAUSES ALL?
All cells in the body contain genetic material called chromosomes that help cells to reproduce. Normal cells in the body grow and then die in a controlled way. Leukemia occurs when a chromosome is damaged, resulting in immature, rapidly dividing cells that do not die. In ALL, we do not know what causes chromosomes to become damaged. Certain risk factors increase a person’s chance of developing ALL. However, just having a risk factor does not mean a person will get cancer, and some people who develop cancer do not have any risk factors. Possible risk factors for ALL include exposure to radiation before birth certain genetic disorders, such as Down syndrome previous chemotherapy treatment or taking other medications that weaken the immune system being born with certain immune-system problems, such as Fanconi anemia.
WHAT ARE THE SIGNS AND SYMPTOMS OF LEUKEMIA?
The signs and symptoms of leukemia are noticed when leukemia cells are growing out of control and overcrowding occurs in the bone marrow. Symptoms may be different depending on the type of cell the marrow is (or is not) able to produce. Common symptoms seen in children include fever or unexplained infections easy bruising, bleeding, and/or petechiae (flat, pinpoint-sized red or purple dots on the skin) In children with darker skin, bruising and/or petechiae can be difficult to see. They are best seen in areas with less melanin, such as the abdomen, buttocks, and inside of the mouth. fatigue and general weakness bone or joint pain (limping or refusal to walk) that may come and go lumps (caused by swollen lymph nodes) often found in the neck, underarms, stomach, or groin swollen belly because of an enlarged liver or spleen decreased appetite/weight loss.
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WHAT TESTS AND PROCEDURES WILL MY CHILD NEED?
The symptoms of ALL, such as looking pale, infections, or bleeding, usually prompt a visit to the primary care provider. Leukemia often is suspected when there are abnormal findings on a blood test called the complete blood count (CBC) or if abnormalities are noticed during a physical exam. To confirm the diagnosis of leukemia, additional testing will be needed. Tests that may be done are listed below.
BONE MARROW ASPIRATION AND BIOPSY A bone marrow biopsy is a test done to determine whether tumor cells are in the bone marrow. A needle is inserted into the marrow inside the bone. Some of the bone marrow (the biopsy) and the fluid in the bone marrow (the aspirate) are collected. Some patients may have a bone marrow sample taken from only one hip bone, while some may have samples taken from both. Patients undergoing bone marrow aspirations and biopsies may experience pain, so children are often sedated for this procedure. Sedation is most often given through an intravenous line (IV). The sedation medications help your child slowly fall asleep and remain comfortable throughout the procedure. If your child is uncomfortable after the test, a mild pain medication such as acetaminophen (Tylenol®) may be given, but not ibuprofen (Motrin® or Advil®) or aspirin as these may increase your child’s risk of bleeding. A specially trained doctor (a pathologist or hematologist) examines the biopsy or aspirate under a microscope to see if white blood cells, red blood cells, and platelets are being produced normally. The doctor also looks for any abnormal cells, such as immature blood-forming cells (blasts), which can indicate leukemia; tumor cells, which can indicate a different type of cancer; or dysmorphic (abnormal-looking) cells, which can indicate a different disease. The bone marrow also is assessed for protein expression of malignant (cancer) cells, which can indicate leukemia, and chromosomal abnormalities, which can diagnose other diseases. Other tests include immune- phenotyping, cytogenetics, and fluorescent in situ hybridization (FISH). During treatment, the bone marrow is checked regularly to determine response to the treatment. The number of cancer cells can be measured and will indicate how well the treatment is working.
IMMUNO-PHENOTYPING
A sample from the bone marrow aspirate will show whether your child has T-cell or B-cell leukemia.
CYTOGENETICS Cytogenetic testing may be another important part of the diagnosis process. Your healthcare team may ask your permission to perform cytogenetic testing on the tumor sample collected during biopsy. Cytogenetic testing includes evaluation of the genes or chromosomes that make up a tumor cell to seek out specific genetic abnormalities that can help determine the most effective treatment for the cancer and identify whether there are specific medications to target the tumor. FLUORESCENT IN SITU HYBRIDIZATION (FISH) FISH is a test that uses special fluorescent dyes that only attach to specific parts of chromosomes. The test can be used to look for specific changes in chromosomes in the leukemia cell. Results from this test may not be available for 1–2 weeks.
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LUMBAR PUNCTURE A lumbar puncture is a procedure done to obtain a small sample of cerebral spinal fluid (CSF), which is the fluid that surrounds and protects our brains and spinal cords. CSF is made continually by our bodies, so the small amount removed is quickly replaced. The central nervous system (brain, spinal cord, and CSF) can be a hiding place for leukemia cells, and this test can help determine if any cancer cells have spread to the brain or spinal cord or if there is an infection in the central nervous system. In a lumbar puncture, also referred to as a spinal tap, a needle is inserted into the back between the spaces of the spinal bones (vertebrae) to obtain a sample of CSF. The needle enters the spinal column below the spinal cord to avoid injuring the cord. This test can be uncomfortable, so some children are sedated to help them lie still. The results will help the physicians determine the type of treatment your child will receive. In certain types of cancers, especially leukemia and some lymphomas, a lumbar puncture may be used to deliver chemotherapy directly into the central nervous system. If a bone marrow biopsy is ordered or due at the same time as the lumbar puncture, these procedures will be done together to limit your child’s exposure to sedation. CHEST X RAY Chest X rays have many uses. For instance, they can be used to look for enlarged lymph nodes inside the chest or lungs, to diagnose infections or spread of disease in the lungs, or to check the placement of tubes and that were put in for treatment. CT SCAN A CT (computerized or computed tomography) scan is a computer-assisted X ray that creates detailed pictures of internal organs and tumors. It used to be called a CAT (computerized axial tomography) scan. The CT machine is a doughnut-shaped X-ray camera that moves around a table that the patient lies on. Every second, the camera moves a very small distance around the patient while taking an X ray. A computer puts these X rays together to help the doctors see a cross-sectional, 3-D image from all angles. CT scans are very helpful in diagnosing and following the stage and location of cancer. CT scans are very useful in diagnosing tumors, infections, blood clots, and areas of abnormal bleeding. Some tumors are regularly checked by CT scan during and after treatment to see how effective the treatment has been and if a relapse has occurred. CT scans are painless, but the patient must lie still during the scan. Some children require sedation to help them lie still. If your child’s belly is being scanned, they may be asked to drink a dye that allows organs to be seen more clearly. Some patients may be given a small amount of dye through an intravenous (IV) line, which puts the dye right into their veins. The dye allows organs to be seen more clearly. The dye can cause a warm, flushing feeling. Generally, there are no side effects from either type of dye; however, allergic reactions are possible. Because there is some radiation exposure with this test, your child’s healthcare team will try to minimize how often it is done.
MRI MRI (magnetic resonance imaging) uses radio waves and magnetic fields instead of X rays to create very detailed pictures of parts of the body. A computer translates the pattern of radio waves into images. MRI images are so clear that they are sometimes more useful than X rays or CT scans. This is true for areas of the brain and spinal cord, blood vessels, bones, and some organs of the body. Certain tumors are regularly checked by MRI during and after treatment to determine how effective the treatment is and if a relapse has occurred.
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For an MRI, a patient lies on a table that is rolled into a machine. The machine surrounds them on all sides, like a tube. (Open MRI machines exist for people who are very anxious in a regular MRI machine.) The MRI is painless, but the machine makes loud noises. Your child may use earplugs or a headset during the MRI. They must be able to lie completely still, and some children require sedation to do this. The MRI usually takes 1-2 hours. Often, a dye is injected into a vein to improve the MRI images. Because they use strong magnets, MRI machines cannot have metal objects inside them. Before an MRI, your child will be asked to remove all metal objects such as jewelry and clothes with metal snaps or zippers. An MRI does not expose your child to any form of radiation.
ULTRASOUND Ultrasound is a technique that uses the echoes from high- frequency sound waves to produce a picture of internal organs or tumors. It has many uses, including finding tumors in the belly, checking the health of the kidneys and bladder, and measuring the size of some organs (like the liver, gall bladder, and spleen). A type of ultrasound that looks at the way blood flows and the condition of the blood vessels, Doppler , can be used to diagnose clots in blood vessels. An ultrasound is a painless test that does not use radiation. The child lies on a table for a short time, and a clear jelly is smeared on the area being examined. (The jelly wipes off easily after the test.) A small, round handle is moved around on the jelly to get a clear picture of the tissue or organ being examined. Depending on the location of the ultrasound, the child may not be allowed to eat or drink for several hours or may need to have a full bladder before the test.
TESTICULAR BIOPSY This test will be done if your doctor thinks that leukemia may be in the testicles. Typically, testicular involvement is suspected if there is a painless enlargement of the testicle. If there is not an enlargement of the testicle and the child has not yet entered puberty, a biopsy likely will not be performed. To obtain the biopsy, a needle is inserted into the testes to remove a small sample of tissue that will be examined under a microscope to look for leukemia cells. This is done in the operating room while your child is asleep. Only a small percentage of boys have testicular disease at initial diagnosis. If your child is diagnosed with testicular disease, your healthcare team will discuss fertility preservation options (like sperm banking) with you.
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WHAT ARE ‘RISK GROUPS’?
In childhood leukemia, “risk groups” are used instead of a system of “stages.” Your healthcare team will perform a series of tests to help determine your child’s type of leukemia and risk group. Once your child is diagnosed with ALL, he or she will be assigned to a risk group based on his or her age, WBC count at diagnosis, leukemia in the spinal fluid, or leukemia in the testicles. This will allow the healthcare team to determine the treatment plan during the first month. Risk groups are determined based on age at diagnosis—Children younger than 1 year or 10 years and older require more aggressive treatment. WBC count at diagnosis—Children who have a WBC count higher than 50,000 require more aggressive treatment. type of leukemia—There are different kinds of childhood leukemia; pre-B-cell ALL is the most common and T-cell ALL is less common.
central nervous system disease—Children with leukemia in their spinal fluid at diagnosis require more aggressive treatment.
disease outside the bone marrow—Sometimes leukemia cells are seen in different parts of the body (such as the testicles). If your child is found to have disease in other parts of the body (called extramedul- lary disease), the treatment needs to be more aggressive. results of cytogenetics and FISH—Leukemia cells can carry certain genetic markers or abnormalities. These markers can affect the type of treatment your child receives. Some types of ALL (such as Philadel- phia chromosome ALL [also called BCR-ABL] or mixed lineage leukemia [MLL] gene rearrangement) can be more difficult to treat and require more aggressive therapy. If there are more chromosomes, called hyperdiploid, less aggressive chemotherapy may be needed. treatment with steroids—Children who receive treatment with steroids before learning that they have leukemia may be placed in a higher-risk group. response to treatment—A bone marrow test or a blood test, called minimal residual disease (MRD), will be done on specific days during the first month of treatment. MRD is a test done on bone marrow or blood that determines if microscopic leukemia remains. It can show the presence of leukemia down to 0.01%. If the MRD is high, more aggressive treatment will be needed. Typically these tests are done after 1 week of chemotherapy and at the end of the first month of treatment. The initial risk groups at diagnosis are
average or standard risk—Includes children 1 to 9.99 years old who have a WBC count lower than 50,000 at diagnosis
high risk—Includes children younger than 1 year and 10 years or older or those with an initial WBC of 50,000 or higher at diagnosis. In addition, children with T-cell leukemia are classified in a higher-risk group. Children younger than 1 year (365 days) or those with ALL involving T-cells or mature B-cell leukemia will be treated on different treatment plans.
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The results from the cytogenetic testing and your child’s response to the initial treatment also will be used to further determine the risk group; however, these results will not be available until your child is 2–4 weeks into therapy. Cytogenetics results can shift your child into a lower or higher risk category. All these risk factors help the healthcare team determine your child’s prognosis and will be used to identify the best treatment plan. Further treatment decisions will be made approximately 1 month into treatment when this additional information is known. After the first month of therapy, each child is placed in one of four risk groups.
LOW RISK
Children between the age of 1 and 9.99 years old with a WBC count lower than 50,000 at diagnosis and all of these criteria: no testicular disease no leukemia in their spinal fluid at diagnosis have “good or favorable” chromosome alterations in leukemia cells (these are called ETV6/RUNX1 fusion or trisomy 4,10) do not have Down syndrome did not receive steroids before diagnosis MRD less than 0.01% after first week of chemotherapy and at the end of the first month of chemotherapy.
AVERAGE OR STANDARD RISK
Children younger than 1 year and 10 years or older with a WBC count lower than 50,000 at diagnosis and all of these criteria: no testicular disease very little leukemia in their spinal fluid at diagnosis (called CNS-2) have “good or favorable” chromosome alterations in leukemia (ETV6/RUNX1 fusion or trisomy 4,10) do not have Down syndrome did not receive steroids before diagnosis MRD in the first week of treatment of 0.01% or more, and MRD at the end of the first month of treatment of LESS than 0.01%. AVERAGE RISK WITH DOWN SYNDROME
children older than 1 year and younger than 10 years who have been diagnosed with Down syndrome WBC count lower than 50,000 at diagnosis no testicular disease no leukemia in their spinal fluid at diagnosis no unfavorable cytogenetics such as MLL-rearrangement, hypodiploidy, or Philadelphia chromosome (also called BCR-ABL).
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HIGH RISK
Children who have any of the following factors are considered high risk: children older than 1 year and younger than 10 years with a WBC greater than 50,000 at diagnosis children 10 years or older, regardless of WBC count have testicular disease have leukemia in their spinal fluid at diagnosis, called CNS-3 leukemia cells with certain chromosome abnormalities (such as Philadelphia chromosome ALL [also called BCR-ABL] or MLL gene rearrangement) children who were treated with steroids before the diagnosis of ALL was made last day of induction therapy MRD greater or equal to 0.01%.
VERY HIGH RISK
do not have Down syndrome have a chromosome abnormality: iAMP21, MLL rearrangement, hypodiploidy (< 44 chromosomes or DNA index of < 0.81)
not in remission by the last day of induction, MRD > 0.01% unfavorable cytogenetics with Day 29 MRD of > 0.01%.
It is important to determine your child’s risk group so the treatment team can determine the chance for a cure. Because ALL is a cancer of the blood-forming cells in the bone marrow, treatment involves the blood system and entire body. All types of B-cell and T-cell ALL are commonly treated with chemotherapy and sometimes with radiation therapy. Your healthcare team will discuss with you the recommended treatment plan based on your child’s risk group.
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HOW IS ALL TREATED?
Children with ALL need to be treated as soon as possible after being diagnosed. The type of treatment is determined by your child’s risk group and may include chemotherapy, radiation, bone marrow transplant (stem cell transplant), and/or CAR T-cell therapy. VENOUS ACCESS DEVICE (VAD) A venous access device (VAD), sometimes called a central venous catheter or central line, is a temporary or long- term intravenous (IV) tube that can be used for the duration of your child’s therapy (keep in mind that “therapy” can be used interchangeably with “treatment”). It is placed in a large vein in the chest or the arm. These long, flexible catheters empty into or near the heart, allowing necessary treatments to be given within seconds. They can be used to administer medications, fluids, chemotherapy, blood products, and nutritional support as needed and to draw blood for testing. A surgery is performed to insert the VAD, and your child will be sedated or given general anesthesia for the procedure. It will be placed either before chemotherapy begins or within the first month of treatment. Not all children will need a VAD. This will be determined by you and your child’s healthcare team. The VAD will be removed when it is no longer needed. There are different types of VADs, such as an implanted port inserted under the skin near the collarbone; a tunneled central venous catheter (Broviac or Hickman) that has a tube; a lumen (either single or double) which comes out of your child’s chest; or a PICC (peripherally inserted central catheter) line, a central line inserted through a vein in the arm. Your child’s healthcare team will discuss each type with you and help you choose the best device for your child’s treatment. Each type of catheter requires slightly different care. A port requires almost no care at home, but a special needle will need to be inserted through the skin into the port each time it is used. Tubing can then be attached to the needle if needed to give medication or IV fluids. An external central line requires routine changes to the dressing that covers the exit site of the line and keeps it in place to prevent infection and to care for the skin around the tube. The external lines also must be routinely flushed with a solution to keep them working properly. You will be taught how to care for the device at home.
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CHEMOTHERAPY Chemotherapy is a cancer treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from growing. Multiple chemotherapy drugs are used to treat both types of ALL (B-cell or T-cell ALL). These medicines are given by mouth; into a vein or VAD, such as a port or Broviac/Hickman (IV); by injection into a muscle (IM); or by a spinal tap into the spinal fluid (called intrathecal, or IT). These drugs are used in combination and in a specific sequence called phases of treatment. Each phase may use different medications and have different schedules for visiting the hospital or clinic. Your healthcare team will discuss the medicines used during each phase and their side effects. INDUCTION The first phase of treatment is called induction. Most children will begin this phase of treatment in the hospital at the time of diagnosis and, depending on their condition, some of this therapy may be given in an outpatient clinic. The goal of the first phase of treatment is to kill all of the leukemia cells and allow normal blood cells to grow again. This is called remission or no evidence of disease (NED) . Remission may be temporary or permanent. It is important to remember that in remission, signs and symptoms of the cancer have disappeared but leukemia cells may still be hiding in the body. Therefore, it is very important to continue with the treatment plan developed by you child’s team. A bone marrow aspirate and a special blood test called minimal residual disease (MRD) will be performed at certain times during the induction phase to determine how quickly your child is responding to treatment. The goal is to have fewer than 5% leukemia cells or “blasts” in the bone marrow by the 8th day of the induction treatment. A bone marrow aspirate and MRD also will be performed at the end of the induction phase to determine if your child is in remission. Most children with ALL will achieve remission by the end of the induction phase; however, if the bone marrow or MRD does not show that remission has happened after induction, your healthcare team will discuss with you further chemotherapy treatments to achieve remission. Even though most children achieve a remission by the end of the induction phase, studies confirm that if treatment was stopped after induction, the leukemia cells would return. As a result, therapy continues for 2–3 years after diagnosis.
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CONSOLIDATION/INTENSIFICATION
The middle phases of treatment, called consolidation/intensification, begin after remission has been achieved. The goals of these phases of treatment are to kill any remaining leukemia cells and to prevent a relapse (i.e., the leukemia cells coming back). The intensity of this phase varies considerably based on the risk group in which your child is treated. This phase of therapy may last 6–9 months. MAINTENANCE The final phase of treatment is called maintenance. This phase continues until there has been 2–3 years of continued remission, depending on the protocol used. The goal of maintenance is to keep the leukemia in remission. Maintenance is much less intensive than previous phases and consists of oral medicines given at home every day. Intermittent IV and IT (into the cerebral spinal fluid) medications are given in the clinic. Most children may return to school during this phase of treatment. Children begin to feel better and their hair starts to grow back. RADIATION THERAPY Radiation treatment is very precise and is given in strictly measured amounts by radiation therapy experts. If radiation is necessary for your child, the radiation oncologist will discuss with you exactly how the radiation will be given and how long the treatments will last. You may also choose to read the Radiation Therapy Handbook for Patients and Families that is available on the APHON website. BONE MARROW TRANSPLANT (BMT) A bone marrow transplant (BMT), also known as stem cell transplant, may be one of the treatment options offered to your family if there is a relapse or it may be part of the treatment plan if your child has high- or very high-risk ALL. The purpose of a BMT is to destroy the relapsed leukemia cells and replace them with normal blood cells. Your child will first receive very high doses of chemotherapy and sometimes radiation therapy to the whole body to destroy all of the blood cells (both the healthy cells and the leukemia cells). Then new bone marrow will be infused, much like a blood transfusion. The new bone marrow may come from different sources and must be a good match for your child. The donor may be related to the child, such as a brother or sister (called a matched family donor), or the donor may be someone who is not related to the child (an unrelated donor). Many children’s cancer hospitals are using umbilical cord blood cells or peripheral blood stem cells as a cell source. BMT can be a difficult process to go through for a child and family. There may be side effects from the chemotherapy, radiation, or medicine used to help the child during and after transplant. Your BMT team will discuss the side effects and risks associated with BMT with you in detail.
CHIMERIC ANTIGEN RECEPTOR (CAR) T-CELL THERAPY
Chimeric antigen receptor T-cell (CAR-T) therapy may be one of the treatment options offered to your family if there is a relapse or it may be part of the treatment plan if your child has high- or very high-risk ALL. CAR-T therapy uses your child’s T-cells (a type of white blood cell) by altering them in a lab to find and destroy leukemia cells. First, your child’s T-cells are removed from their blood using a procedure called leukapheresis. Next, the T-cells are sent to a lab and a specific chimeric antigen receptor (CAR) is added which will look for your child’s leukemia cells. Once the CAR T-cells are ready, your child may receive chemotherapy for a few days to weaken their immune system and give the CAR T-cells a better chance to find and attack the leukemia cells. Then, the CAR T-cells will be infused, much like a blood tranfusion. Your team will discuss the side effects and risks associated with CAR-T therapy with you in detail.
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CLINICAL TRIALS Most improvements in the treatment of childhood ALL have been made through research and enrollment of children with ALL in clinical trials. During a clinical trial, a standard treatment for a disease is compared with a new treatment that is being tested. This experimental treatment is believed to be at least as good as, and possibly better than, the standard treatment. Clinical trials allow your healthcare team to determine whether promising new treatments are safe and effective. The goal of a clinical trial is to find out which treatment offers the best chance for cure with the least number of side effects. Participation in clinical trials is voluntary. Because clinical trials invol ve research into new treatment plans, all risks cannot be known ahead of time, and unknown side effects may occur. Prior to agreeing to a clinical trial, you will be given paperwork that explains the risks and benefits. Before making a decision about your child’s participation in a clinical trial, you should discuss the risks as well as the potential benefits with your child’s doctor and treatment team. Depending on the nature of your child’s diagnosis, your healthcare team may discuss additional treatment opportunities not mentioned in this handbook.
WHAT ARE COMMON SIDE EFFECTS FROM TREATMENT?
Chemotherapy drugs have an effect on all rapidly dividing cells, including normal cells. When normal cells are damaged, side effects of treatment are seen. Side effects are usually temporary, and the severity of these effects can be decreased with medications. Each child may be affected differently, with some experiencing more side effects than others. There are many types of chemotherapy drugs, each with their own side effects. For more information about each chemotherapy drug, please refer to the APHON drug information sheets. Common side effects of chemotherapy medicines include low white blood cell counts (neutropenia), low red blood cell counts (anemia), low platelet counts (thrombocytopenia), bleeding, bruising, nausea and vomiting, mucositis (sores in the mouth and throat), alopecia (loss or thinning of hair), darkening of the skin and nails, poor nutrition, diarrhea, or constipation. Hair thinning or loss usually begins around week 3 of treatment. Your child’s hair may grow back very short and fall out again between treatments. Medicines such as Zofran (ondansetron)
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or Kytril (granisetron) are given to help prevent or lessen nausea and vomiting. Low blood counts may be treated with a transfusion of RBCs or platelets. When a child has low blood counts, he or she needs to be carefully monitored for fevers and other signs of illness or infection. Your healthcare team will teach you how to do this at home. Poor nutrition can occur because your child’s taste buds change during therapy and food may taste different. Some children do not feel like eating or will eat less than usual. Your dietician can provide tips to help your child. Another type of medication that your child may have as part of their cancer treatments is Steroids. Steroids have many uses. A few of these uses in cancer treatment include helping to decrease inflammation, kill cancer cells (when combined with chemotherapy) and lessen nausea. Steroids are important in the treatment of ALL, but their side effects can make it a challenge to care for your child. Discuss these potential side effects with your healthcare team for help in dealing with steroid treatment. Side effects from steroids may include increased appetite, specific food cravings, joint pain in arms or legs, increased irritability (being “in a bad mood”), and difficulty sleeping. LONG-TERM FOLLOW-UP After your child’s therapy is completed, your child will have follow-up examinations and medical tests as part of routine cancer care. The first year off therapy is the time when the risk of relapse is highest, so your child will be seen in clinic frequently for a physical exam and blood tests. The frequency of visits to your oncology team will decrease after the first year off therapy. It is important that your child continues to be followed by your oncology team to monitor for side effects from treatment that may be noticed months to years later. Side effects can be caused by the cancer itself, the treatment, or a combination of both. After your child has been off therapy for 2–3 years, he or she may be transitioned to a long-term follow-up or survivors’ follow-up clinic if one is offered at your hospital. At these clinics, the focus changes from being a “cancer patient” to being a “cancer survivor.” Your child may be seen in a long-term follow-up clinic throughout his or her adult life. It is important for children and adults to learn about the treatment they received when they were younger and to commit to necessary long-term follow-up care to ensure their ongoing health. You may be given a summary of treatment from your oncology team that details your child’s treatment history (dates and types of chemotherapy, radiation, and surgeries). This is important information that needs to be shared with future healthcare providers. Because the chemotherapy was given when your child was growing, your healthcare team may see your child more frequently to monitor for long-term side effects from the medicine. Some of these side effects may not be seen until many years after treatment ends. Early detection and prompt care can, in some cases, lessen the severity of residual problems. For example, tests to monitor kidney and liver function may be done yearly, or an echocardiogram (ultrasound of the heart) and electrocardiogram may be done to monitor the heart for damage caused by some of the medicines. It is important to keep these ongoing appointments with your healthcare team. Late effects of cancer may include physical, emotional, and economic effects. Rarely, a second cancer can result from previous treatment. Psychological and social adjustments or concerns about health insurance, academic achievement, and employment issues can be discussed, and help can be offered in long-term follow-up clinics.
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RELAPSE
Unfortunately, despite the best care and treatments, some children may relapse. Relapse means the leukemia cells have come back. When a relapse occurs, it is often unexpected and is always unwelcome. The entire family may have the same reactions they had at diagnosis, such as shock and disbelief. You may wonder, “How could this have happened? Why, if we did everything as instructed, would the disease return?” Sadness and anger also may be the responses to the idea of having to undergo treatment again. Relapse can be even more complicated than the initial diagnosis, in part because the child and family have a better idea of what to expect. While struggling with intense feelings, you are in the position of having to learn about and decide on a new course of treatment. It is important to recognize that relapse, while frightening, does not mean your child will not be cured of the disease. It means that a new approach to treatment must be taken. For more information about relapse and long-term effects, see the Resources section at the end of this handbook.
HOW CAN I WORK WITH MY CHILD’S HEALTHCARE TEAM?
The care of your child requires a team approach. You are a key player on your child’s healthcare team. You know your child better than anyone else, and your input is important. Other members of your child’s healthcare team include doctors, nurses, nurse practitioners, physician assistants, pharmacists, and social workers. Always communicate openly with the members of your child’s healthcare team. If there is anything you are not sure about, ask the team. Write down your questions as you think of them, so you’ll remember to ask them during
your next meeting with your healthcare team. Important questions you may want to ask:
What is my child’s risk group and what does that mean? What treatment choices are available? What treatment do you recommend and why? What are the risks or side effects during the treatment? What are the risks and side effects after the treatment? What are my child’s chances for survival? What are the chances that the disease or condition will recur?
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IS MY CHILD’S DIET IMPORTANT DURING TREATMENT?
Yes, your child’s diet is important. Research has shown that well- nourished children tolerate treatment better and experience fewer treatment delays. Nausea and vomiting can be a distressing side effect of treatment, and your child’s healthcare team will prescribe medications to help prevent and treat these side effects. Your child may have difficulty eating normal meals during treatment. Foods that are appealing to your child will be tolerated better. Offer foods that are high in calories, protein, and carbohydrates. Small frequent meals are often better tolerated than three larger meals. When possible, choose more nutritious foods. Your child’s nurse or dietitian can help you put together a list of possible food choices. If steroid medications, such as prednisone or dexamethasone
(Decadron), are part of the treatment, your child’s appetite will likely be increased. These medicines may make your child feel constantly hungry and crave unusual foods. Your child may want one particular food constantly. Try to keep healthy snacks on hand. Steroids may cause your child to gain weight and develop a round face and puffy appearance, but these side effects are temporary. It is important to offer your child fluids to drink frequently throughout the day so that dehydration is avoided. Signs of dehydration include decreased urine output, dizziness, and a dry mouth. Multivitamins, herbs, and other supplements should be avoided unless approved by your child’s healthcare team because they can interact with your child’s treatment. Please ask your healthcare team if you are considering having your child take any of these types of supplements. A dietitian may be a member of your child’s healthcare team. Dietitians are trained in the calorie and nutritional needs of children. The dietitian can provide you with education regarding your child’s dietary needs and give you ideas about how to meet these needs during treatment. Your child’s healthcare team will monitor your child’s nutritional status, height, and weight during and after treatment to try to prevent problems. When a concern about nutrition arises, your child’s healthcare team will discuss with you the ways to manage and improve your child’s nutrition.
CAN MY CHILD ATTEND SCHOOL AND OTHER ACTIVITIES DURING TREATMENT?
Your child’s ability to go to school during therapy will depend on the intensity of the treatment and your child’s response to the treatment. There may be extended periods when your child is unable to go to school because of hospitalizations or treatments. However, it is important that your child keep up with schoolwork, even during these times. Federal laws protect children with disabilities or illnesses to ensure that they receive the same education as their peers. Talk with your child’s healthcare team and school staff about these laws. Then work with them in arranging for a tutor or finding other ways to help your child stay on track with schoolwork. Discuss with the healthcare team your child’s ability to attend school. Some children are able to attend school
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between hospitalizations or treatments. Many hospitals and clinics have resources such as educational liaisons to assist in coordinating school services and educating teachers and classmates to prepare them for your child’s return to school.
ARE MY FEELINGS NORMAL? WHAT CAN I DO ABOUT THEM?
Hearing that your child has cancer is shocking and overwhelming. Many parents say, “I didn’t remember anything after the words, ‘Your child has cancer/been diagnosed with this disease.’” Parents often feel numb and have a hard time believing the diagnosis. It is important to know that this is normal and expected. Most families have difficulty processing all of the information the healthcare team is providing in the beginning. However, over time, the information will be repeated and can be absorbed. Many families feel somehow responsible for their child’s disease. Feelings of guilt are also common because they could not protect their child from illness or because of the amount of time it took to diagnose the child. This disease is not caused by anything that you did or did not do. The cause of childhood cancer is not known. It often takes time for the cancer diagnosis to be made because symptoms are often the same as those of many childhood illnesses. Feelings of sadness, anger, and helplessness about your child’s diagnosis also are common. These feelings are normal. Each member of the family may express these emotions in different ways and at different times. Talking honestly with each other about these feelings, emotions, and reactions will help everyone in the family. Keep in mind that there is no right or wrong way to feel. Each member of the family needs the chance to express their feelings when they are ready and in their own way. Talking to friends, family, and members of the healthcare team can be difficult at times—however, sharing your feelings can help you cope. Your child will benefit from family and friends showing their care through communication and support.
HOW CAN I HELP MY CHILD?
Children often think that something they did caused their cancer/disease. You can help your child by reinforcing that this is not the case. Make sure your child understands that your feelings of anger and sadness are directed at the cancer, not at them. This will help you keep a close relationship with your child. Your child will need to share their feelings with someone that they trust, and they may choose someone other than a parent to avoid upsetting the parent, which is OK. Don’t be afraid to ask your child about their feelings—it may be what your child is waiting for. Keep in mind that your child is still a child first in spite of the disease. As children go through treatment, they still have all the needs of a growing child. All children need love, attention, the opportunity to learn and try new skills, and limits. Do not avoid talking to your child about therapy. Use explanations that your child will understand. Children tolerate treatment better if they understand it and are allowed to help make decisions about their care, when appropriate. The things children can imagine on their own are often more frightening than what is actually happening. As a parent you may find it difficult to watch your child go through treatment. Your child may sometimes seem sicker during treatment than before treatment. Your feelings about what your child is going through must be balanced with the knowledge that treatment provides the chance of curing the disease and making it possible for your child to live a full and meaningful life. It’s difficult to accept how cancer and treatment change your child, but most of these changes, like hair loss, are temporary. Despite outward changes, your child is still the same person on the inside. Most healthcare centers have a psychosocial team that can support you and your child through their diagnosis and treatment.
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RESOURCES
National Cancer Institute (www.cancer.gov) Clinical Trials registry (www.clinicaltrials.gov) Children’s Oncology Group (www.childrensoncologygroup.org) Cure Research (www.cureresearch.com)
The National Children’s Cancer Society (www.thenccs.org) American Childhood Cancer Organization (www.acco.org)
IMPORTANT PHONE NUMBERS
NOTES
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1660 INTERNATIONAL DRIVE, SUITE 600
MCLEAN, VA 22102
WWW.APHON.ORG
The Association of Pediatric Hematology/Oncology Nurses (APHON) was formed as a 501(c)(3) public charity (EIN 23-7446224) to develop educational content, deliver informative programs, promote the latest evidence-based practice guidelines, and provide resources to the pediatric, adolescent, and young adult communities and their families. The Handbook for Families series is made possible through the generous support of our APHON Star Fund donors and our Industry Relation Council Members.
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Manual para la famillia
Leucemia Linfoblástica Aguda
SERIE ONCOLOGÍA
Manual para la famillia
Leucemia Linfoblástica Aguda
SERIE ONCOLOGÍA
Leucemia Linfoblástica Aguda
MANUAL PARA LA FAMILIA
AUTORES
LeighAnna Hutchinson, DNP APRN FNP-BC Brandi O’Dell, MSN RN CPN REVISOR DE CONTENIDO APHON Steering Council REVISOR POR PARTE DE LOS PADRES
Betsey Young
ACERCA DE ESTA PORTADA Esta portada está especialmente diseñada para que tu hijo(a) la ilumine y personalice. Cuando tu hijo(a) termine de colorearla, devuélvela a la clinca o al consultorio medico donde el manual. El encargado de la atención médica de tu jiho(a) la enviara a APHON para que la puliquen en su sitio web.
Este manual ha sido publicado por Association of Pediatric Hematology/Oncology Nurses (APHON) con fines educativos únicamente. El contenido ha sido desarrollado por fuentes confiables y no pretende ser el único tratamiento aceptable o seguro para la anemia aplásica. Bajo ciertas circunstancias o condiciones, es posible que se requiera un tratamiento adicional o diferente. A medida que nuevas investigaciones y experiencias clínicas amplíen las fuentes de información disponibles sobre el tratamiento para la anemia aplásica, es posible que sea necesario hacer ajustes en el tratamiento y la terapia con fármacos. APHON no garantiza ni asegura, ni hace ninguna otra declaración, expresa o implícita, con respecto a la validez o suficiencia de los tratamientos o a la información relacionada contenida en este manual. APHON otorga al comprador de este manual un permiso ilimitado para fotocopiar o imprimir el manual para uso educativo del comprador o de la institución del comprador. El comprador no puede alterar el contenido ni recibir ninguna ganancia económica por la distribución de fotocopias de este producto.
Copyright © 2025 by the Association of Pediatric Hematology/Oncology Nurses www.aphon.org
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