Your child will probably be making regularly scheduled return visits to the neurosurgeon or other specialists to follow up on his or her progress. Your child may also need to return to the hospital for radiation therapy or chemotherapy as an outpatient. Professionals affiliated with support services may be monitoring you at home to provide help, but there are still other experts who may have to be consulted. As you try to reestablish normal life, be aware that your child’s health may have to be monitored for a very long time, by specialists such as these:
Neuroradiologist: One way that doctors monitor the effectiveness of your child’s treatment is to conduct magnetic resonance imaging (MRI) or computed tomography (CT) scans at scheduled intervals. Everyone wants to make sure that the treatment did what it was supposed to do and that the tumor is not growing back. Always have previous scans available to the neuroradiologist, who is the physician who orders scans, so that they can be compared with the most recent one.
It is natural for parents and children to be anxious at these times. Watchful waiting can become intense. The results of these tests may even be uncertain. For example, it can be difficult or impossible to distinguish recurrent tumor from scar tissue. When doctors are in doubt, they will wait do another scan or seek other opinions. Newer, more accurate diagnostic imaging techniques (such as functional MRI [fMRI], single-photon emission tomography [SPECT], and positron emission tomography [PET] scans) are becoming available. Unclear reports do not necessarily mean disaster!
The question “What if . . .” may always be lurking. But even a child whose medical situation is stable will need to be monitored when treatment stops. And permanent remissions become cures.
Rehabilitation Therapist: Either the tumor itself or the effects of surgery or treatments may cause impairments in the use of arms or legs, in coordination, or in swallowing. Communication difficulties (language, speech, or understanding) may also occur. Some of these effects may be temporary, or other areas of the brain may take over that function. But your child may need professional therapy to become as active and independent as possible. Physical, occupational, or speech therapists may help restore lost abilities. Children under the age of 3 years may benefit from an early intervention evaluation.
A physiatrist (rehabilitation doctor) can evaluate your child and make recommendations for a specific type of rehabilitation therapy. Physical therapists use motion and exercise to improve strength and movement. Occupational therapists evaluate and treat difficulties related to self-care and daily living. They can help develop new ways of doing things like getting dressed or eating, using special equipment if necessary. Children can have therapy as an outpatient, or occasionally a child will benefit from an inpatient intensive rehabilitation program. Therapy also can be delivered at home. The family may get involved in helping implement a rehabilitation program.
Neuroendocrinologist: The pituitary, thyroid, and hypothalamus are glands in the brain that secrete hormones that control metabolism, growth, and sexual development. Sometimes treatment for a brain tumor can alter their function and lead to medical problems, such as diabetes insipidus, early or delayed puberty, and growth problems. A doctor who specializes in endocrinology will be able to monitor the possible effects of surgery, radiation therapy, or chemotherapy on these glands with blood tests and growth charts. Your child’s primary care physician typically will observe your child for normal growth and development. If there is a problem, your child can be referred to a specialist.
Pediatric Neurologist: A neurologist is an expert in diagnosing and treating disorders and diseases of the brain and spinal cord. Deficits and changes in your child’s abilities or functioning can be identified, and new problems may be detected early. A pediatric neurologist typically checks reflexes, coordination, and the ability to perform fine motor skills, among other things. The findings of these tests will help assess the need for rehabilitative treatment and enable you to seek out other specialists, if needed.
Pediatric Neuro-oncologist or Oncologist: Pediatric neuro-oncologists and oncologists are pediatricians with specialized training in oncology or neuro-oncology (cancer as it relates to the brain and spine). They are uniquely trained to diagnose, treat, and monitor children with brain and spinal cord tumors. Often such an individual will coordinate your child’s care, discussing treatment options with neurosurgeons and radiation oncologists. They often work with Children’s Oncology Group (COG) institutions and thus have access to state-of-the-art therapies and national trials. (In most instances, a clinical trial will be available for your child’s disease. If not, your child’s oncologist is likely to plan therapy on the basis of findings from earlier clinical trials.)
As pediatricians, these physicians are attuned to normal childhood development and diseases. This background, along with extensive knowledge of cancer therapy, allows them to provide information about likely side effects of treatment (particularly as it relates to your child’s developmental status) and to guide you to other subspecialists as needed. A number of major pediatric institutions have long-term follow-up programs for cancer survivors. The pediatric oncologists who run these programs usually focus on screening and treating problems that may arise over the long run.
Pediatric Neuropsychologist: Treatment of a brain tumor in children may produce either short-term or long-term problems with learning and behavior. Because some problems become evident only as the child grows older, repeated neuropsychological testing (every 12 to 18 months) is essential to monitor progress and obtain appropriate assistance. Testing should be performed by a psychologist who is knowledgeable about pediatric brain tumors; a neuropsychologist will have additional training related to how diseases and treatments of the brain and central nervous system (CNS) affect psychological function.
Ideally you should have your child tested prior to beginning any chemotherapy or radiation therapy, to provide the psychologist with a baseline. Some treatment protocols specify that testing be done at certain times. Otherwise, you, as your child’s advocate, may have to push for this testing to be done and to be covered by insurance.
Results of these tests will be useful if you need to develop an individualized education plan (IEP) with your child’s school. The pediatric neuropsychologist will be able to help with school issues and can also be an advocate for your child.
Pediatric Psychologist: Pediatric psychologists are trained to deal with the emotional and behavioral aspects of physical health. They can help with pain management, eating or sleeping problems, and social adjustment. For example, feelings such as grief and depression can often surface in a child who has a serious illness and should not necessarily be considered serious emotional problems. Misbehavior and even family difficulties can be normal reactions to the reality of the situation. These problems are common enough (during treatment and in the years that follow) that parents should take steps to lessen or prevent their effects. It is best to seek out a psychologist familiar with these kinds of situations and not to waste time with a generalist who may not recognize that some of these behaviors or feelings are normal for your particular child.
Pediatric Oncology Nurse Practitioner/Specialist and Physician’s Assistant: Pediatric oncology nurse practitioners and physician’s assistants are highly trained health care team members who often work directly with your child’s doctor and can be a wonderful resource for you. Both nurse practitioners and physician’s assistants can help with medical procedures, including physical exams, under the supervision of a doctor. They often are the medical professionals who can simplify some of the medical jargon for you and coordinate the many tests and procedures your child will undergo.