About Childhood ALL
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 leukemia so they can develop better treatments with less toxic side effects.
- To access information about coping with childhood cancer, click here.
- Click here for childhood ALL statistics.
Click on the links below for more information about childhood ALL:
- Survivorship and Special Healthcare Needs
- Follow-Up Care
- Long-Term and Late Effects of Treatment
- Returning to School
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, fear and concern. 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.
Your child could face two to three years of treatment, which includes spending time in the hospital. Parents of children diagnosed with acute lymphoblastic leukemia (ALL) should ask the doctor for information about addressing the risk for infertility. Many children with ALL are treated in clinical trials.
Postremission (consolidation and maintenance) therapy lasts for two to three years after ALL goes into remission. Children respond better to treatment than adults do.
Stem Cell Transplantation. Most children don't need stem cell transplantation but allogeneic stem cell transplantation is an option for children who have very high-risk or persistent disease, or have relapsed or refractory ALL. Cord blood stem cells may also be a source of donor cells for the transplant.
Clinical Trials. When it comes to finding the right treatment for your child's cancer, a clinical trial may be an option. Your child will have access to new or improved therapies under study and not yet on the market. Discuss with your child's doctor the possibility of participating in a clinical trial, where treatment is administered in a safe, closely monitored environment.
Refractory and Relapsed Leukemia. Some patients have residual leukemic cells in their marrow even after intensive treatment. The disease is then referred to as “refractory leukemia.” Other patients achieve remission, but they have decreased numbers of normal blood cells and a return of leukemia cells in the marrow. This is referred to as "relapsed leukemia."
The drug clofarabine (Clolar®) is used to treat some children aged 1 to 21 years with relapsed and refractory ALL after they've undergone at least two regimens of chemotherapy. An allogenic stem cell transplantation may also be used.
Chimeric Antigen Receptor (CAR) T-Cell Therapy may also be used for young patients with relapsed or refractory ALL. Tisagenlecleucel (Kymriah®) is FDA approved for the treatment of patients up to age 25 years who experience a second or later relapse or refractory B-cell ALL. Tisagenlecleucel treatment is designed to help the body’s own immune system fight cancer. Each dose is made specifically for an individual patient. It is made using the patient’s own T cells (white blood cells that help the body to fight infections and cancer). The T cells are collected from the patient and then modified with a new gene containing a CAR protein so that the T cells can identify and kill leukemia cells with CD19 on their surface. These modified cells are infused back into the patient’s bloodstream to kill the cancer cells.
For more information about CAR T-Cell Therapy, download the free LLS booklet Chimeric Antigen Receptor (CAR) T-Cell Therapy Facts.
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.
Childhood cancer survivors have special long-term healthcare needs. You may want to consider a survivorship program that focuses on life after cancer for your child. Several major hospitals around the country offer these programs.
Even though most cases of childhood acute lymphoblastic leukemia (ALL) are cured, your child should visit his or her pediatrician or doctor at least once a year for a complete physical exam and any additional needed tests. Survivors don't necessarily need a cancer specialist for routine checkups and screening, but they do need to see doctors who understand their previous treatment and its risks. Coordination between your child's cancer specialists and pediatrician is essential to provide the best care.
Regular doctor visits are encouraged to:
- Enable doctors to assess the full effect of therapy
- Detect and treat disease recurrence
- Identify and manage 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.
Coordination between your child's pediatrician and oncologist is important for the best care possible. Some treatment centers offer comprehensive follow-up care clinics for childhood cancer survivors. To find one near you, visit The Pediatric Oncology Resource Center.
Some side effects of cancer treatment, such as fatigue, can linger for months or years after therapy. Some medical conditions like heart disease and other cancers may not appear until years after treatment ends.
Most childhood survivors of leukemia don't develop significant long-term or late effects of treatment. However, for some patients the effects can range from mild to severe.
Talk to your child's treatment team about possible long-term and late effects. Your child’s risk for developing long-term or late effects can be influenced by:
- Treatment type and duration
- Age at the time of treatment
- Overall health
Some long-term and late effects become evident with maturation (puberty), growth and the normal aging process. Have your child evaluated with a physical exam yearly or more often as needed. Early intervention and healthy lifestyle practices (not smoking, good nutrition, exercise, regular screenings and follow-up) help.
Long-term and late effects can impact your child's physical, mental and cognitive (brain function) health in several ways.
Physical Effects. Children treated for leukemia may be at increased risk for:
- Growth delays
- Thyroid dysfunction
- Hearing loss
- A secondary cancer
Mental Effects. Most childhood survivors of cancer are psychologically healthy. However, some studies have indicated that a small number of childhood leukemia survivors were more likely than healthy peers to report changes in mood, feelings and behavior, including depression and posttraumatic stress disorder.
Cognitive Effects. Learning disabilities can begin during treatment or appear months or years afterward. Areas that can be affected include:
- Spatial relationships
- Problem solving
- Attention span
- Information processing
- Planning and organizing
- Concentration skills
- Fine motor coordination
Once your child is in remission, he or she will likely be going back to school. This reentry to the classroom can be daunting for a child of any age. 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 he or she returns to school. Work with your child's teachers and medical providers to develop a program tailored to his or her needs that features baseline testing, special accommodations and long-term planning.
Click here to read about children with cancer returning to school.
- Download or order LLS's free booklets:
- Acute Lymphoblastic Leukemia
- Learning and Living with Cancer: Advocating for Your Child's Educational Needs
- Long Term and Late Effects of Treatment for Childhood Leukemia or Lymphoma Facts
- Choosing a Blood Cancer Specialist or Treatment Center
- Knowing All Your Treatment Options
- Download lists of suggested questions to ask your healthcare providers about treatment options
- About Childhood Blood Cancer
- Long-Term And Late Effects Of Treatment For Childhood Cancer Survivors
- Follow-Up Care for Childhood Cancer Survivors