Protocols for clinical trials require specific follow-up schedules. For instance, your child may require follow-up every 3 months for a period of time (usually 1–2 years), then every 4 to 6 months for a while, and then annually. Follow-up might include:

• Physical exams by primary treating doctor
• MRI scans
• Blood tests (complete blood count and hormonal tests)
• Audiograms
• Neuropsychological testing yearly or biyearly

If your child was not on a clinical trial, find out from the oncologist what the required schedule will be and where the appointments will take place. Make sure your child understands that, after treatment ends, doctor appointments, MRI scans, and blood draws will still be an occasional necessity. Follow-up care for possible late effects of treatment is a separate process.

Possible late effects

At diagnosis, parents do not know the price their child will ultimately pay for reprieve from the brain or spinal cord tumor. Short-term effects may be discomfort, seizures, weakness in an arm and/or leg, and school absences. Long-term effects range from none to severe. These can include subtle or pronounced physical disabilities, learning disabilities, an impaired endocrine system, hearing loss, altered bone growth, infertility, and an increased risk of second cancers.

It is important to know the possible risks based on the treatment your child received. You can then store this knowledge in the back of your mind. As one mother said, “I hope for the best and I deal with the rest.” For detailed information about possible late effects from childhood cancer, read Childhood Cancer Survivors: A Practical Guide to the Future, 3rd edition, by Nancy Keene, Wendy Hobbie, and Kathy Ruccione.

Physical disabilities

Permanent weakness of an arm, leg, or entire side of a body can occur from the tumor itself or from swelling related to the treatment. Weakness of the muscles of the eyes and face or those involved in swallowing can also occur from the tumor and treatment. Physical, occupational, and speech therapy may be necessary for months or years. These services should be provided through the child’s Individualized Education Program (IEP) at school (see Chapter 18, School). As the child gets older, an exercise program can be established with a physical therapist, occupational therapist, or personal trainer. Insurance companies are often reluctant to pay for long-term rehabilitation, so it is helpful for parents to request a case manager or advocate to help them obtain these services.

Educational issues

School entry and reentry for children who have spent months or years receiving treatment is difficult. Physical changes make it hard for some children who had brain or spinal cord tumors to socially fit in at school. To compound matters, side effects and late effects of the treatments used for brain or spinal cord tumors often include decline in academic functioning. A decrease in IQ is a side effect for children who received radiation treatments and sometimes for those who deal with seizures. Difficulty with memory or changes in attention span, verbal fluency, and speed of information processing can also affect children.

It is imperative that all children who received treatment for brain or spinal cord tumors receive neuropsychological testing to identify learning problems. The results of these tests can be incorporated into your child’s IEP. A neuropsychologist can also use the results of these tests to help adult survivors identify strategies to cope with learning issues. For further information, refer to Chapter 18, School.

Hormonal problems

Hormonal problems occur in children with pituitary and hypothalamic tumors and as a late effect of radiation to the brain. The following are types of hormonal problems that your child may develop:

• Growth hormone deficiency, resulting in short stature
• Deficiency in hormones required to develop normally in puberty
• Thyroid hormone deficiency

Long-term follow-up should include a visit to an endocrinologist with experience treating survivors of childhood cancer, who can screen for these late effects. Hormones (pills or injections) can be given to your child to help correct any deficiencies. It is essential that problems with growth and pubertal hormones be identified early, because treatment needs to begin when your child is young. Thyroid hormone replacement (a daily pill) can start at any time. If your child is fatigued or has decreased energy, make sure the doctor tests thyroid functioning.

Hearing loss

Decrease in hearing (with high-frequency hearing lost first) occurs most often in children treated with cisplatin. The hearing loss is sometimes worse if the child receives radiation therapy as well. Audiograms (hearing tests) are done at frequent intervals while the child is receiving cisplatin and should be part of the long-term follow-up upon completion of treatment. Children with hearing loss are often unable to filter out background noise. This presents a problem for children in the classroom, where background noise is common. Your child’s audiologist may be able to recommend devices that will help your child. Hearing aids are sometimes needed for children with significant hearing loss.

Survivorship

An essential aspect of survivorship is making healthy choices. Good health habits and regular medical care help protect survivors’ health and lessen the likelihood of late effects from cancer treatment. A sizable number of adult cancers are linked to lifestyle choices. Eating a healthy diet, staying physically active, using sunscreen, avoiding excessive alcohol consumption, maintaining a healthy weight, and not smoking all help keep survivors healthy and cancer-free. To protect survivors from injury, it is also important to wear bike or motorcycle helmets, use seat belts, and call a cab if the person driving has had too much to drink. Survivors have little or no control over their genetic make-up or the environment in which they live. But making healthy choices about how to live the rest of their lives gives them control over some of their future.

Immunizations

If your child was diagnosed before she received all her immunizations, ask the neurooncologist when she should resume the regular schedule for immunizations. If your child had one or more peripheral stem cell transplants, then all immunizations may need to be repeated. Your child’s neuro-oncologist will order blood tests to determine which immunizations need to be repeated.

Risks of smoking

Teens need continuing counseling about problems associated with smoking cigarettes or engaging in other high-risk behaviors. The combination of effects from treatment and smoking increases the chance of heart disease; heart attack; congestive heart failure; stroke; cancer of the mouth, throat, and lungs; and death from sudden cardiac failure. An article about survivors and smoking in a youth newsletter ends with these words:

Safe sex

Every teen and young adult who has survived cancer should be counseled about safe sexual practices. Despite the prevalence of sexual messages in our culture, most teens and young adults are woefully underinformed about the facts. Even though the administration of many chemotherapueutic drugs may cause infertility, many babies have been born to long-term survivors of brain and spinal cord tumors. Survivors should not assume that they are infertile.

In addition, sexually transmitted diseases are of concern for anyone engaging in sexual activity. All sorts of diseases, some potentially fatal (e.g., hepatitis C, HIV/AIDS) and some not (e.g., genital herpes, genital warts, gonorrhea), can be transmitted through sexual intercourse. One nurse practitioner at a large follow-up clinic stated: