Acute Lymphoblastic Leukemia Patient & Family Handbook

taste different. Some children do not feel like eating or will eat less than usual. Your dietician can provide tips to help your child. Many parents notice side effects if their child is taking steroids such as dexamethasone or prednisone. Steroids are used during induction and at various times during the remaining treatment. Side effects from steroids are increased appetite, specific food cravings, joint pain in arms or legs, increased irritability (being “in a bad mood”), and difficulty sleeping. Steroids are important in the treatment of ALL, but their side effects can make it a challenge to care for your child. Discuss these potentially challenging side effects with your healthcare team for help in dealing with steroid treatment. n 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 once a month 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 will see your child every year 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.

n 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

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