Before the age of 19, one in every 330 children in the United States will develop some form of cancer. Like their adult counterparts, more children today are surviving cancer and returning back to the activities in their life before their medical diagnosis. The back to school experience has challenges for most students, but for those going back during or following cancer treatment there are many unique needs. Parents can play a critical role in advocating for their children from a medical, academic and even legal perspective to ensure that their child makes a successful transition.
Why is this support needed? Children and young adults with cancer may find their classmates don’t know much about the condition and may have perceptions that can hurt the cancer survivor. These include thinking the child did something “bad” to get cancer or thinking cancer is contagious, neither of which is true. Straight-forward, reassuring information can help turn anxious classmates into supportive friends. Teachers, school nurses, guidance counselors and others can all play a role in supporting the child by working with parents and community volunteers from the medical profession and advocacy groups.
About one-third of childhood cancers are leukemias."Welcome Back: Working Together to Support the Cancer Survivor at School," is an educational program developed by the Leukemia & Lymphoma Society (LLS). Originally developed to support grade school students, LLS has now expanded the program to address the needs of teens in high school and young adults entering college, whose experiences are very different from younger students.
Presented by local medical experts and educators, the programs helps teach academic, administrative, medical and other professionals ways they can help ease and support a child’s return to school after cancer treatment. The short and long-term effects of cancer treatment are covered, as well as strategies to overcome educational obstacles and the laws that protect the rights of children who are cancer survivors.
For the parents of younger children, LLS also offers a free booklet that can be downloaded online or ordered from the society’s information resource center. "Learning & Living with Cancer: Advocating for your Child's Educational Needs," helps parents address the effects of cancer treatment. It contains information about neuropsychological testing for cognitive effects; explanation of the laws to protect children with educational needs and a description of classroom accommodations for these children. The booklet is supported through a grant from the Lance Armstrong Foundation and is available by contacting the LLS Information Resource Center at 1-800-955-4572 or via downloading it from the LLS website. (See resources below.)
Another offering, the Trish Greene Back to School Program for Children with Cancer, provides free materials and videos for parents, health professionals and school personnel to help children with their return to school. LLS staff from local chapters can arrange for presentations in the classrooms to help the patient's classmates understand what their friend has been going through.
New Program Supports College-bound Students
On college campuses, LLS is now reaching out to staff members, including student health center staff and disability support services staff, to encourage them to take advantage of this program. "Teenagers and college-aged students have different issues from younger children who have been diagnosed with cancer," says Clare Karten, LLS senior director of mission education. "For example, adolescents and young adults are at an age when making independent decisions is increasingly important yet those who have cancer often find themselves having to be more dependent on their parents. Another issue is coping with the desire to be like their peers at a time when cancer treatment may be affecting them physically and psychologically."
Cancer is the leading cause of death by disease among U.S. children between infancy and age 15, according to the National Cancer Institute. Among the major types of childhood cancers, leukemias (blood cancers) and brain and other central nervous system tumors account for more than half of new cases. White children are more likely than children from any other ethnic group to develop cancer.
Although the incidence of invasive cancer in children increased slightly over the past 30 years, mortality rates have declined by 50 percent for many childhood cancers. The combined five-year survival rate for all childhood cancers has improved from less than 50 percent before the 1970s to 80 percent today, and the 10-year survival rate is almost 75 percent.
Learning & Living With Cancer: Advocating for your child’s educational needs
National Cancer Institute: Childhood Cancers Information