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Childhood non-Hodgkin lymphoma (NHL)

Non-Hodgkin lymphoma (NHL) occurs in individuals at virtually all ages, but it is uncommon in children. With current treatments, NHL in most children is highly curable. The results depend on achieving a precise diagnosis through staging of the disease and using complex multi-drug treatments. 

Because of new and better therapies, cancer survival rates for children have improved dramatically during the last several decades. Scientists continue to search for the causes of childhood lymphoma so they can develop better treatments with less toxic side effects.

Find facts and statistics about childhood NHL and other blood cancers.


Caring for Kids and Adolescents with Blood Cancer: A Workbook for Families

Download or order a copy of the workbook which provides information, resources, and worksheets to use throughout your child's cancer journey. Call an Information Specialist at 800-955-4572 to order a copy. 


What should I do if my child Is diagnosed with NHL?

A child's cancer diagnosis can bring with it feelings of uncertainty for parents and other family members. Suddenly, you're thrust into a fast-paced world of change, worry, and fear.  You'll need to make treatment decisions while taking the time to comfort your child—and at the same time trying to cope with your own emotions.

Children and adolescents with NHL should be referred to medical centers that have a specialized pediatric oncology team to ensure that young patients receive optimal treatment, support, and follow-up care or a pediatric protocol as part of a clinical trial. 

Learn how to find a blood cancer specialist or treatment center. 

Young adults and parents of children diagnosed with NHL should talk to members of the oncology team about the stage and the specific subtype of NHL. Doctors use this information about the patient’s disease in order to determine the most effective therapy. It is also important to discuss the planned therapy with members of the oncology team to learn about the drugs, potential side effects, long-term effects, and treatment schedule.

Learn more about communicating with your blood cancer specialist or find a list of suggested questions to ask your healthcare providers.  


Download the free Blood Cancer United Coloring for Kids app 

This free coloring app allows children to express their creativity and also offers activities to help them learn about blood cancer. Find it in the Apple Store or on Google Play.


View a 3D model of NHL’s impact on the body. Click or tap the "Interact in 3D" button to begin. 


After diagnosis: Navigating your child's care 

Navigating your child’s blood cancer care isn’t always simple or straightforward—but we’re here to guide you through it. Whether you’re newly diagnosed or in remission, you’ll find the information, support, and resources you need to navigate every step of your child’s blood cancer journey. 

Visit Navigating your care: Children and teens


NHL treatment 

Your child's oncologist (cancer specialist) should develop a treatment plan that limits the amount of therapy needed to bring about a remission. Be sure to ask the oncologist about potential side effects and long-term effects when considering treatment options. Some long-term effects, like infertility, can be serious.  

Children with NHL may sometimes be treated differently than adults. Choosing the most effective therapy for adolescents and young adults can be challenging and is a topic of ongoing research. Pediatric treatment strategies are used to treat adults who have certain subtypes of NHL, including Burkitt lymphoma and lymphoblastic lymphoma. 

Learn more about the impact non-Hodgkin lymphoma treatment may have on your child's fertility and reproductive health. 

A clinical trial may be an option when it comes to finding the right treatment for your child's cancer. Clinical trials for children, adolescents, and young adults with cancer are generally designed to compare potentially more effective therapy with therapy that's currently accepted as standard. Your child may have access to new or improved therapies under study that are not yet on the market. Discuss with your child's doctor the possibility of taking part in a clinical trial, where treatment is administered in a safe, closely monitored environment. 

Clinical trials

A clinical trial may be an option when it comes to finding the right treatment for your child's cancer. Clinical trials for children, adolescents, and young adults with cancer are generally designed to compare potentially more effective therapy with therapy that's currently accepted as standard. Your child may have access to new or improved therapies under study that are not yet on the market. Discuss with your child's doctor the possibility of taking part in a clinical trial, where treatment is administered in a safe, closely monitored environment.

Learn more about clinical trials.  


Get free clinical trial support! Visit our Clinical Trial Support Center (CTSC).

Connect with registered nurses with expertise in blood cancers who can personally assist you or your caregiver through each step of the clinical trial process. 


Managing school during treatment

Learning disabilities can begin during treatment or appear months or years after. Educate family members, friends, school personnel, and healthcare providers about your child's possible long-term and late effects of treatment. Talk with teachers about your child's needs before they return to school. Work with your child's teachers and medical providers to develop a program tailored to the child’s needs that features baseline testing, special accommodations, and long-term planning. 

Neuropsychological testing: Any child who is at risk for cognitive effects or is having difficulty in school should have neuropsychological testing done by a licensed pediatric psychologist or neuropsychologist to check for possible learning challenges. Ask your child’s healthcare team for a referral. Find out if neuropsychological testing is covered by insurance as it can be expensive. When testing is complete, schedule time for the neuropsychologist to explain the results and make any recommendations for adjustments or accommodations that can support your child at school. If needed, ask the neuropsychologist to help explain the recommendations to the school staff. These recommendations will also be used to help determine if your child needs a formal education plan, such as an Individualized Education Plan (IEP) or 504 Plan. 

School psychological assessment: If neuropsychological testing is not an option, a school-based assessment may help to determine your child’s educational needs or may be required by the school. These assessments are usually performed to determine if your child is eligible for special education programs. Generally, school-based assessments are less effective at linking cancer treatment with learning or behavior problems. Ask your child’s school administrators for more information. 

Find information, support, and resources for schooling during your child’s blood cancer treatment.

Long-term and late effects of treatment  

Some side effects of cancer treatment, such as fatigue, can linger for months or years after therapy. Some medical conditions, including heart disease and other cancers, may not appear until years after treatment ends. Long-term and late effects can affect your child's physical, mental, and cognitive (brain function) health. 

Most childhood survivors of lymphoma don't develop significant long-term or late effects of treatment. However, for some patients, the effects can range from mild to severe. 

Learn more about the long-term and late effects of treatment.

Chemotherapy

Children treated for lymphoma may be at increased risk for the following: 

  • Fatigue
  • Growth delays
  • Thyroid dysfunction
  • Hearing loss
  • A secondary cancer 

Some long-term and late effects may become evident as the child grows and matures. Early intervention and healthy lifestyle practices (not smoking, good nutrition, exercise, regular screenings, and follow-up) may have a positive effect on the occurrence and/or severity of effects.

Radiation

Children who receive radiation therapy to the chest are at an increased risk of breast cancer later in life. Patients who received radiation therapy to the chest (mediastinal) area should do the following: 

  • Perform monthly self-breast exams
  • Have an annual clinical breast exam performed by a healthcare provider at least once a year until age 25 and then every 6 months after
  • Have a yearly mammogram starting at age 25 or 8 years after treatment (whichever comes last)  

All children who have undergone mediastinal radiation therapy should have baseline testing for heart function. This should be followed by testing every three to five years after treatment or more regularly if any abnormalities are found. 

Follow-up care 

Your child should visit their pediatrician or primary care physician at least once a year for a complete physical exam and any additional necessary tests. Your child should also be regularly examined by an oncologist. 

Regular doctor visits are encouraged to help with the following: 

  • Enabling doctors to assess the full effect of therapy
  • Detecting and treating disease recurrence
  • Identifying and managing long-term and late effects of treatment 

Your pediatrician should recommend a schedule for having your child's learning skills assessed. If your child appears to be experiencing learning disabilities, special education methods can help. 

Find more information about follow-up care, including what to expect, long-term and late effects of treatment, survivorship clinics, and other resources, such as The National Comprehensive Cancer Network (NCCN) treatment guidelines.

Survivorship and special healthcare needs 

After treatment, most children can expect to have full and productive lives. Many survivors return to school, attend college, enter the workforce, marry, and become parents.

You may want to consider a survivorship program for your child that focuses on life after cancer. Several major hospitals around the country offer these programs. 

Our Survivorship Workbook collects all the important information you need throughout diagnosis, treatment, follow-up care, and long-term management of blood cancer.  

Get free, one-on-one support

Call, email, or chat with a member of our highly trained support team.

Henry, blood cancer survivor

Henry blood cancer survivor

Blood Cancer United Dare to Dream Project – Transforming treatment and care for kids

It’s Childhood Cancer Awareness Month.

And kids deserve better. Help us transform treatment and care for kids with blood cancer.

Learn more

Blood Cancer United resources

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Everyone affected by blood cancer—patients, survivors, caregivers, researchers, advocates, fundraisers, everyone—has a story. Share yours.
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Lisa

Lymphoma survivor

Steve

NHL Survivor

Tricia

T-cell lymphoblastic lymphoma (T-LL)

Varad

non-Hodgkin lymphoma (NHL)

Felicia

non-Hodgkin lymphoma (NHL)

Allison

non-Hodgkin lymphoma (NHL)

Marko

anaplastic large cell lymphoma (ALCL)

Jessica

nodular sclerosis Hodgkin lymphoma (NSHL)

Steven

non-Hodgkin lymphoma (NHL)

Susanne

diffuse large B-cell lymphoma (DLBCL)

Peyton

non-Hodgkin lymphoma (NHL)

Dixie

non-Hodgkin lymphoma (NHL)

The Leukemia & Lymphoma Society (LLS) is now Blood Cancer United. Learn more.