Children who are diagnosed with a brain or spinal cord tumor are usually sent to the nearest academic medical center or children’s hospital. Most of these centers combine their efforts by participating in clinical studies with other institutions across the country. If you are sent to a local hospital or to an oncologist, rather than to a multidisciplinary team that includes pediatric neuro-oncologists and pediatric neurosurgeons, you should consider going elsewhere. Recent research showed that children treated at major brain tumor centers did significantly better than those treated at local hospitals.

Because most brain and spinal cord tumors require several phases of treatment, you may need to go to different hospitals at different times. For example, your child may get radiation at one hospital and chemotherapy at another, or the neuro-oncologist may see your child in a clinic separate from the hospital.

The multidisciplinary team

The first step of treatment for most children with brain or spinal cord tumors involves surgery. It is vital that a pediatric neurosurgeon perform the surgery. A pediatric neurosurgeon is a doctor who has either done a pediatric fellowship (an extra year of training in pediatrics after neurosurgical residency) or devotes at least half of his or her time to operating on children. Most pediatric neurosurgeons are in large teaching hospitals or in children’s hospitals in large cities. A list of pediatric neurosurgeons and where they practice is available at www.aspn.org. For more information about pediatric neurosurgeons, see Chapter 10, Surgery.

After surgery, the responsibility for care of most children with brain or spinal cord tumors shifts to a pediatric neuro-oncologist. Neuro-oncologists are doctors who specialize in the non-surgical treatment of brain tumors. Along with neurosurgeons and neuro-oncologists, children with brain or spinal cord tumors may also see one or more of the following doctors (in alphabetical order):

• Endocrinologist. Doctor who monitors hormonal or growth problems.
• Ophthalmologist. Doctor who specializes in the eye.
• Orthopedic surgeon. Doctor who monitors the spine for any curves (i.e., scoliosis) or changes resulting from surgery or treatment of a brain or spinal cord tumor.
• Pathologist. Doctor who determines the type of tumor after surgery by analyzing cells under a microscope.
• Pediatrician. Doctor who cares for children in their hometown.
• Pediatric neurologist. Doctor who treats seizures.
• Pediatric neuropsychologist. A psychologist with a doctoral degree (PhD) who assesses children at various stages of treatment to identify any learning problems that develop from the tumor or treatment.
• Pediatric surgeon. Doctor who implants venous catheters used for chemotherapy.
• Physiatrist. Doctor who specialize in rehabilitation of nerves, muscles, and bones.
• Psychiatrist. Doctor who diagnoses and treats mental or psychological problems.
• Radiologist. Doctor who interprets scans at diagnosis and throughout treatment.
• Radiation oncologist. Doctor who designs and manages the administration of radiation therapy.

The doctors

At large children’s hospitals, there are doctors at all levels of training, from first-year medical students to experienced professors of medicine. It is often hard to sort them all out in the early days after diagnosis. The following section describes each type of doctor you might meet at a training hospital.

A medical student is a college graduate who is attending medical school. Medical students often wear white coats, but they do not have MD after the name on their name tags. They are not doctors.

An intern (also called a first-year resident) is a graduate of medical school who is in the first year of postgraduate training. Interns are doctors who are just beginning their clinical training.

A resident is a graduate of medical school in the second or third year of postgraduate training. Most residents at pediatric hospitals will be pediatricians upon completion of their residencies. Residents are temporary: they rotate into different services every 4 weeks.

A fellow is a doctor pursuing post-residency study in a particular specialty. Most fellows you encounter will be specializing in pediatric oncology. Not all teaching hospitals have fellowship programs.

Attending doctors (or simply, attendings) are highly trained doctors hired by the hospital to provide and oversee medical care and to train interns, residents, and fellows. Many of them also teach at a medical school.

Consulting doctors are doctors from other services who are brought in to provide advice or treatment to a child in the oncology unit. The attending may ask for consults with other specialists, who may appear in your child’s hospital room unexpectedly. If questions arise about who these doctors are and what role they play, you should ask the fellow or attending assigned to your child.

Each child in a teaching hospital is assigned an attending, who is responsible for that child’s care. This doctor should be “board certified” or have equivalent medical credentials. This means the doctor has taken rigorous written and oral tests given by a board of examiners in his or her specialty and meets a high standard of competence. You can call the American Board of Medical Specialties at (866) ASK-ABMS (275-2267) or visit https://www.certificationmatters.org/is-your-doctor-board-certified/search-now.aspx to find out if your child’s attending is board certified.

If your family is insured by a health maintenance organization (HMO), you probably will be sent to the affiliated hospital, which will have one or more pediatric oncologists on staff. If this hospital is not a regional pediatric hospital or is not affiliated with the Children’s Oncology Group, you can go elsewhere to get state-of-the-art care (see the “Choosing a hospital” section later in this chapter). However, make sure your insurance will cover care at the institution you want to use.

The nurses

An essential part of the hospital hierarchy is the nursing staff. The following explanations will help you understand which type of nurse is caring for your child.

An RN is a registered nurse who obtained an associate’s degree or higher in nursing and then passed a licensing examination. RNs supervise all other nursing and patient care staff (such as nurses aides or nursing assistants), give medicines, take vital signs (e.g., heart rate, breathing rate, blood pressure), monitor IV machines, change bandages, and care for patients in hospitals, clinics, and doctors’ offices. Many RNs in the pediatric oncology service have received specialized training in pediatric oncology nursing.

A nurse practitioner or clinical nurse specialist is a registered nurse who has completed an educational program (generally a master’s or doctoral degree) that teaches advanced skills. For example, in some hospitals and clinics, nurse practitioners perform procedures such as spinal taps. Nurse practitioners or clinical nurse specialists are often the liaison between the medical teams and patients and their families. They help parents keep all the different multidisciplinary team members straight and help interpret medical jargon.

An LPN is a licensed practical nurse. LPNs complete certificate training and must pass a licensing exam. In some medical facilities, LPNs are allowed to perform most nursing functions except those involving administration of medications. Many pediatric oncology services limit the involvement of LPNs to personal care, such as patient hygiene and monitoring fluid input and output.

The head or charge nurse is an RN who supervises all the nurses on the floor for one shift. If you have any problems with a nurse, your first step in resolving the issue should be to talk to the nurse involved. If this does not resolve the problem, a discussion with the charge nurse is your next step.

The clinical nurse manager is the administrator for an entire unit, such as a surgical or medical floor or outpatient clinic. The clinical nurse manager is in charge of all nurses in the unit.

The tumor board

Many hospitals have a committee to review surgery, pathology, and radiology findings and discuss potential treatment plans for patients. This committee is called the tumor board. Members consist of representatives from the patient’s multidisciplinary team, a pathologist, a radiologist, and other senior specialists who deal with brain and spinal cord tumors. Very often, the consensus opinion from the tumor board is the treatment offered to the family. Many centers present individual cases to the tumor board at various times during treatment, such as after each imaging study or when the effects of treatment need to be assessed as per the protocol.