Your child has been diagnosed with non-Hodgkin lymphoma (NHL). You are likely feeling shocked and scared. You are not alone. Support and treatment are available. Your child’s healthcare team will help you as you make important decisions about your child’s health.
NHL is cancer of the lymphatic system. The lymphatic system is part of the immune system, which helps the body fight infection. The lymphatic system includes:
Lymph. Infection-fighting fluid made mostly of a certain type of white blood cell called lymphocytes.
Lymph nodes. Small bean-shaped organs that filter lymph and store white blood cells. Lymph nodes are grouped together throughout the body. Some areas where they are found include the neck, armpit, and groin. The lymph nodes may sometimes swell when you have a cold or infection.
Bone marrow. Soft tissue found in the center of bones. Blood cells are made in the bone marrow.
Thymus. The thymus helps build the immune system in young children. It produces a type of white blood cell called T-lymphocytes, which fight infection. The thymus is located underneath the breastbone.
Spleen. Organ that stores certain lymphocytes and filters the blood. It’s located under the ribs on the left side of the body.
Other organs in the body, such as the tonsils and digestive tract, also contain lymphatic tissue.
With NHL, cancer cells form in the lymphatic system. Lymphocytes begin a period of uncontrolled growth. When the cancerous lymphocytes group together in a lymph node or organ, such as the spleen, they form a tumor. The tumor can spread, or metastasize, to another part of the body, such as the lungs. The presence of cancer cells makes it hard for the body to fight infection and can cause other health problems.
Children at any age can get NHL, but kids ages 10 to 19 are affected most often. NHL is not contagious. This means your child can’t pass it to another person.
NHL occurs when white blood cells grow abnormally, or mutate. What causes this to happen is not fully known. If the cells crowd lymph nodes or other areas of the body, they can cause tumors to form. Mutations in certain genes may affect the way your child’s cells grow. This gene mutation is often random and couldn’t have been prevented. In rare cases, other factors, such as exposure to certain viruses, chemicals, or radiation, play a role. But most often, the cause of cancer in children is unknown.
Some common symptoms of non-Hodgkin lymphoma include fever, night sweats, and swollen lymph nodes in the neck, chest, armpits, or groin.
Other symptoms can depend on the location of the lymphoma:
If the lymphoma starts in the belly or abdomen, the child might have belly pain, fever, constipation, and loss of appetite. This is because the tumor is pressing on abdominal organs.
If the lymphoma starts in the chest, the child might have trouble breathing, pain with deep breaths, cough, or wheezing. Lymphomas in the chest can also press on a main blood vessel called the superior vena cava. This can cause swelling and a bluish color in the head and arms. If left unchecked, it can also affect the brain and may even be life-threatening.
Your child may have experienced some of these symptoms, or other symptoms.
Your child’s healthcare provider examines your child. You will be asked about your child’s health history. Your child may also have one or more of the following:
Blood tests to take a blood sample and test it.
Imaging tests to take detailed images of areas inside the body. These may include a chest X-ray, MRI, CT scan, ultrasound, and PET scan.
Bone marrow aspirations and biopsies to take samples of bone marrow from the hip bones.
Lumbar puncture, also called spinal tap, to take a sample of the fluid around the spinal cord from the child’s lower back.
Staging is the process that determines the size of the cancer and how much it has spread. Most cancers have their own staging system. Staging helps the healthcare team plan treatment for your child. The staging process used for NHL looks at all of the following:
Location of the primary tumor
If the cancer is all above or below the diaphragm, the breathing muscle that separates the chest from the abdomen
If the cancer has spread to other areas of the body
The cancer is also broken down into stages 1 through 4 (often written as Roman numerals I through IV). The different stage numbers refer to the tumor’s size and if it has spread. For instance, stage I is a very early stage of cancer. Stage IV means the cancer is widespread. NHL is also broken down into further classifications. Your child’s health care provider can tell you more if needed. Talk to the health care provider if you have any questions about the stage of your child’s cancer.
There are many different types of childhood NHL. Your child’s healthcare provider will talk to you about the type your child has. The treatment your child receives depends on the type of NHL he or she has. Treatments may be combined. Your child may require 1 or more of the following treatments:
Surgery to remove all or part of a tumor. This is not a common treatment for childhood NHL.
Chemotherapy, called chemo, or other medicines to destroy cancer cells. Multiple chemo medicines may be used. They are given through an IV or intravenous tube that’s usually put into a vein in the arm or chest. Or, they may be given by mouth or injection.
Radiation therapy to destroy cancer cells and shrink a tumor using high-energy X-rays. Radiation may be used before or after other treatments.
High-dose chemotherapy with a stem cell transplant. Young blood cells, called stem cells, are taken from the child or from someone else. This is followed by a high dose of chemotherapy medicine, and possibly radiation. This causes damage to the bone marrow. After the high-dose chemotherapy, the stem cells are replaced.
The goal of supportive treatments is to protect the child from infection, prevent discomfort, and bring the body’s blood counts to a healthy range. During your child’s treatment, he or she may be given antibiotics. These are medicines that help prevent and fight infection. Antinausea and other medicines may also be given. These help ease side effects caused by treatment. Your child may receive a blood transfusion to restore the blood cells destroyed by treatment. Blood is taken from a donor and stored until the child is ready to receive it.
With early treatment, NHL is often curable. But chemotherapy and radiation may cause some problems, such as damage to certain organs. So your child’s health will need to be monitored for life. This may include clinic visits, blood tests, imaging tests, and ultrasounds of the heart.
Receiving a cancer diagnosis for your child is scary and confusing. It’s important to remember that you are not alone. Your child’s healthcare team will work with you and your child throughout your child’s illness and care. You may also wish to seek information and support for yourself. Doing so can help you cope with the changes cancer brings. Learning about and talking with others who also have a child with cancer may help you and your family cope. Some helpful resources include:
Lymphoma Research Foundation
The Leukemia & Lymphoma Society