children an important feeling of being included in the “regular” world. This helps children feel safe. Children who feel included and safe in their community grow up comfortable asking for help and wanting to contribute to their community. You can help your child be a part of activities that help with self-esteem and self-reliance. Your child’s hematolo- gist may recommend limiting some types of activities. You can explore alternatives that will give your child opportunities to develop skills and talents outside of the classroom. At the start of the school year, meet with your child’s teacher, principal, and school nurse. Beginning with preschool and kindergarten, make sure that school personnel are educated about your child’s thalassemia. Consider giving them educational materials provided by your hematology team. Nurses and social workers from the team can call or visit your child’s school to help educate your child’s teachers.
Although children with thalassemia may miss some school due to doctor visits and periods of not feeling well, it is to their benefit to attend school as much as possible. Each child is unique, and there may be other ways the educational plan can be designed to help your child. Your child may need tutoring to help catch up after missing school because of treat- ments. Ask the school and your healthcare team if there are tutoring programs at school or at the hospital. Aim for your child to be healthy, happy, and successful, and work with your child’s healthcare team to provide the kinds of support your child deserves.
PROGNOSIS STATEMENT Prognosis is a word that doctors use to describe what they believe the outcome will be for a patient, including the chances of recovery. Your child’s cancer prognosis is as unique as he or she is. There are many factors that affect survival outcomes. A child’s age at diagnosis, the extent of disease, genetic factors, infections, nutrition, delays in the timing of treatment, and how well your child’s body can tolerate chemotherapy and radiation all play an important role in the child’s long-term outcome. Because general statements about survival rates are just numbers, please talk to your medical team about your child’s individual prognosis and plan of care. SUGGESTED READING Butler C., et al. (2011). Cooley’s Anemia Foundation: About Thalassemia . https://www.thalassemia.org Mayo Clinic Staff. (2012). Thalassemia. http://www.mayoclinic.org/diseases-conditions/thalassemia/home/ovc- 20261825 National Institutes of Health, National Heart, Lung, and Blood Institute. (2010). Explore Thalassemias . Washing- ton, DC: U.S. Department of Health and Human Services. https://www.nhlbi.nih.gov/health/health-topics/topics/ thalassemia
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