Kaitlyn hates school. She has a hard time remembering instructions the teacher gives, so she often feels confused in class. When she looks out the window, her attention drifts off. Homework is a challenge for lots of reasons: she forgets to write down assignments, she is confused about what to do or she leaves her textbook in school.

Kaitlyn’s teacher gets very frustrated with her. She tells Kaitlyn’s parents that she is a bright girl who just doesn’t work hard enough and that her work is sloppy and disorganized. Kaitlyn is starting to feel that she is not as smart as the other children in her class.
Kaitlyn is a survivor of childhood leukemia.

There is certainly much to celebrate for the 250,000 survivors of childhood cancer in North America. Thirty years ago, almost all children and teens with cancer died. Today, nearly three quarters of the 12,400 children and adolescents (under age 20) diagnosed each year are cured. The cure rates are even higher for childhood leukemia. Treatment for childhood cancer is one of the great success stories of modern medicine.
Along with the joyous celebrations, however, is a need for accurate information and excellent follow-up care. The surgery, radiation and chemotherapy used to cure children sometimes affect growing bodies and developing minds. Children may develop health or learning problems caused by the treatments that saved their lives.

Risk for late effects of treatment depend on many factors including the type of disease, age at diagnosis and treatment used. Some examples of late effects after cure from childhood cancer are:

·Learning disabilities in survivors treated with radiation, chemotherapy and/or surgery to the brain.
·Breast cancer at an early age in female Hodgkin’s survivors who received chest radiation in their teens.
·Heart disease after treatment with chest radiation or certain kinds of chemotherapy.
·Second cancers from chemotherapy drugs or radiation used to cure the first cancer.
·Symptoms of posttraumatic stress syndrome in survivors and their parents.
•Infection with the hepatitis C virus in some survivors who received transfusions prior to July 1992.
Fortunately, good health habits and appropriate medical care can help survivors make the most of the lives they have won.

Find a knowledgeable healthcare provider
The best way to get optimum care is to see a multi-disciplinary team at a major medical center on a regular basis. These follow-up programs usually provide a review of treatments received, counseling regarding potential health risks and any necessary diagnostic tests such as cardiac evaluations, hormonal studies, psychological evaluations or testing for learning disabilities. Follow-up clinics not only provide comprehensive care for long-term survivors, but also participate in research projects that track the effectiveness and side effects from various clinical trials. In addition, members of the follow-up clinic team act as advocates for survivors with schools, insurance agencies and employers. The focus of these programs should be to educate survivors on strategies to maximize their health and well-being.
If Kaitlyn went to a comprehensive follow up clinic, she would get in-depth testing to evaluate her cognitive strengths and weaknesses. The staff would contact the school to advocate for the types of help Kaitlyn needs to become a successful student. Many children who survive leukemia have problems thinking, remembering and learning. With appropriate help, they usually do very well in school.

Get a copy of the medical records
Every survivor should have a medical summary that includes the type of cancer he had and the treatments he received. A summary of care contains information that helps healthcare professionals know what type of problems might develop. Many cancer centers and late effects programs give the survivor a medical summary after treatment is completed. Survivors can call the cancer center where they were treated to request one or they can print out a “Cancer Patient’s Treatment Record” at www.patientguides.com/survivors and ask their oncologist to fill it out.
It is also a good idea to obtain copies of pertinent x-rays and procedure reports from treatment. Hospitals and clinics may not retain these or they may be put in storage and be difficult to track down at a later date. Survivors may be charged for copies, but it is well worth the price for the peace of mind that comes from having your own set of records. If survivors develop late effects from treatment, these early records are crucial for the current doctor to review.

Nancy Keene is the co-author, along with Wendy Hobbie and Kathy Ruccione of Childhood Cancer Survivors: A Practical Guide to Your Future (O’Reilly & Associates). Keene is the mother of a survivor of childhood leukemia and the author of four books: Childhood Leukemia, Childhood Cancer, Working with Your Doctor and Your Child in the Hospital. Excerpts from Childhood Cancer Survivors are available online at http://www.patientcenters.com/survivors. Additional information on survivorship, location of follow-up clinics and Internet support groups is available from Candlelighter’s Childhood Cancer Foundation at (800)336-CCCF or http://www.candlelighters.org. Online support groups are hosted by the Association for Cancer Online Resources at http://www.acor.org.