Watch and wait for children and teens

Watch and wait (active surveillance) involves closely watching a patient’s condition but not giving any treatment unless there are changes in signs, symptoms or test results that show the condition is getting worse. Watch and wait may be used to avoid or delay the need for treatments such as chemotherapy/targeted therapy, which can cause side effects or other problems. During watch and wait, certain exams and tests, such as blood tests and imaging tests, are done periodically to monitor the condition.

For a small number of childhood blood cancer patients with specific diagnoses, watch and wait may be an appropriate treatment plan.  

Your child’s doctor can monitor their condition for disease progression with regular physical exams and lab tests. Your child won't take any drugs or undergo any forms of treatment during this period. 

If your child has a nongrowing or slow-growing disease and no symptoms, watch and wait may be preferred; they can avoid drug treatment and its potential side effects until they need drug treatment. This approach is based on studies that indicate early treatment in some situations isn't beneficial. 

Other terms for this treatment strategy include watchful waiting and active monitoring.  

What your child's doctor looks for during watch and wait

You must visit your doctor regularly so they can check you for any health changes, specifically monitoring whether your disease remains stable or starts to progress. Your doctor monitors your test results to decide when it's time to start treatment and what the best treatment option is for you. Depending on the disease, your doctor may advise you to begin treatment if you have:

• Lymph nodes that are getting larger in the neck, armpits or groin
• Weakness or feeling tired
• Shortness of breath
• Feeling of fullness from an enlarged spleen or liver
• A relatively rapid increase in the number of lymphocytes in the blood
• Easy bruising or bleeding (caused by low platelet count)
• Worsening anemia (low red blood cell count)
• Frequent infections or illness
• Bone or other organs that have become affected by cancer
• Fevers when there is no infection
• Heavy night sweats
• Unexplained weight loss
• A loss of overall well-being

What else can I do during watch and wait?

Although you won’t receive treatment during watch and wait, there are still things you can do to improve your health and wellbeing. Taking control of what you can control may make you feel less anxious.

• Learn as much as you can about your child's diagnosis. Know the signs or symptoms that may mean it’s time to start treatment. Research the latest treatment advancements.
• Find a hematologist-oncologist who specializes in your child's diagnosis and establish them as a patient.
• Do not skip any doctor appointments, even if your child feels well. Some patients may stay stable for years before symptoms or disease progression makes treatment necessary. If you notice changes in your well-being at any time, don’t wait to reach out to your healthcare team.
• Maintain health insurance coverage if at all possible.
• Improve your child's health with nutrition, exercise, and other good health practices, such as not smoking and cutting back on alcohol. When the time comes, you will be at your best to tolerate treatment and at lower risk for serious treatment complications.
• Discuss childhood immunizations with your doctor.
• Take care of you and your child's mental health. Join a support group or connect with another watch and wait patient to help your child work through feelings and answer your questions. 
   

The Patti Robinson Kaufmann First Connection Program is a free service that matches patients with trained peer volunteers who have shared similar experiences. If feelings of anxiety or depression begin to interfere with your daily activities, ask your child’s healthcare team for a referral to a mental health professional. 

Questions to ask your child's healthcare team

• Is watch and wait the best treatment plan for my child?
• What will their monitoring schedule be, and what tests will be included?
• What signs or symptoms will indicate that my child needs to begin treatment?
• What symptoms do I need to tell my child’s healthcare team about immediately?
• What can I do during the watch and wait period to keep my child healthy and feel well?
• Where can I learn more about my child’s diagnosis and watch and wait?
• How can I connect with other parents or find a support group?  

Find more question guides for communicating with your healthcare providers.