The idea of a child having cancer strikes fear in the hearts of all parents. Certainly, the main focus following a childhood cancer diagnosis is the child’s survival. The good news is that great advancements have been made in the treatment of childhood cancer. In fact, new treatments have increased the survival rates for children who have a cancer diagnosis to approximately 80 percent (U.S. Cancer Statistics Working Group, 2004). In addition to working with doctors to implement the most appropriate cancer treatment protocols, parents must focus concurrently on coping with their children’s diagnosis and thinking about their own quality of life and that of their children (e.g., Roddenberry & Renk, 2008) during the course of their children’s cancer treatment protocol. How parents manage this experience can have a great effect on how well children will adjust to their cancer treatment protocol and the life changes that result from a diagnosis of cancer. Clearly, this post-diagnosis period is quite complex, with the emotional experiences being beyond description.
In the midst of the crisis and complexities of this post-diagnosis period, however, parents also need to be considering the potential long-term effects of the cancer treatment protocols that their children will complete. Of most concern over the long-term for children who are diagnosed with cancer are the cognitive late effects that are likely to occur following cancer treatment protocols. In fact, some researchers estimate that 50 to 60 percent of childhood cancer survivors are at risk for neurocognitive impairments (Hewitt, Weiner, & Simone, 2003). The impairments that children may experience vary greatly. Common impairments include decrements in children’s visual-motor and fine motor skills, mathematical abilities, spatial and other types memory, attention and concentration, and hearing (Armstrong & Briery, 2004). Further, children who have undergone cancer treatment protocols often experience decrements in both their intellectual functioning and their academic achievement (e.g., Armstrong & Briery, 2004). Decrements in both intelligence and achievement test scores may make it difficult for these children to receive extra educational services under the usual exceptional student education categories. As a result, these children may benefit from receiving services in conjunction with a health impairment designation, as their difficulties are likely due to the effects of their cancer treatment protocols.
Because the impact from cancer treatment protocols may vary across children, parents must monitor their children’s cognitive abilities and learning closely over time. Although some children demonstrate difficulties in learning shortly after the completion of their cancer treatment protocols, other children may not exhibit impairments until several years after the completion of their cancer treatment protocols. Some (e.g., Nathan et al., 2007) suggest that such a delay in the appearance of these impairments may be due to damage to the parts of the brain responsible for advanced cognitive abilities and for organizational, reasoning, and time management skills. In particular, researchers believe that damage to the white matter of the brain occurs in conjunction with cancer treatment protocols that directly affect the central nervous system (e.g., certain chemotherapies; Nathan et al., 2007), resulting in the cognitive late effects noted above. Of all age groups, young children can be affected most significantly. In particular, the development of critical brain areas and pathways in the brains of young children may be affected by cancer treatment protocols (e.g., Kaleita, Reaman, MacLean, Sather, & Whitt, 1999).
Given these possible cognitive late effects and related educational difficulties, researchers now recommend that children who are undergoing treatment protocols for cancer receive a baseline neurocognitive evaluation and then be re-evaluated periodically throughout their school years (Nathan et al., 2007). In particular, these children should receive regular evaluations of their cognitive and learning abilities. Such evaluations should include, at the very least, measures of children’s intellectual functioning (using an intelligence test) and academic achievement (using an individual achievement test). In seeking these evaluation services, parents should identify a psychologist who is knowledgeable about the cognitive late effects described here and who can administer relevant instruments competently. As part of the adjustment process involved with children’s cancer diagnoses, parents should prepare to continuously advocate for their children so that they can allow their children to flourish academically after they assist them with healing their bodies.
Armstrong, F. D., & Briery, B. G. (2004). Childhood cancer and the school. In R. T. Brown (Ed.), Handbook of pediatric psychology in the school setting (pp. 263-281). Mahwah, NJ: Lawrence Erlbaum Associates.
Hewitt, M., Weiner, S. L., & Simone, J. V. (Eds.). (2003). Childhood cancer survivorship: Improving care and quality of life. Washington, DC: National Academies Press.
Kaleita, T. A., Reaman, G. H., MacLean, W. E., Sather, H. N., & Whitt, J. K. (1999). Neurodevelopmental outcome of infants with acute lymphoblastic leukemia: A Children’s Cancer Group report. Cancer, 85, 1859-1865.
Nathan, P. C., et al. (2007). Guidelines for identification of, advocacy for, and intervention in neurocognitive problems in survivors of childhood cancer: A report from the children’s oncology group. Archives of Pediatrics and Adolescent Medicine, 161, 798-806.
Roddenberry, A., & Renk, K. (2008). Quality of life in pediatric cancer patients: The relationships among parents’ characteristics, children’s characteristics, and concordance among informants. Journal of Child and Family Studies, 17, 402-426.
U.S. Cancer Statistics Working Group. (2004). United States cancer statistics: 2001 incidence and mortality. Atlanta, GA: Department of Health and Human Services, Centers for Disease Control and Prevention and National Cancer Institute.