Comprehensive Brain Tumor Clinic
If your child has just been diagnosed with a brain tumor, you and he or she may be frightened and overwhelmed by all that’s happening. The following has been written to help you sort out the many people who are here to help and the journey you and your child will take.
What Happens at the Beginning?
When your child is first diagnosed or suspected of having a brain tumor, he or she will probably see many different doctors and nurses. Your child may already have been admitted to Golisano Children’s Hospital or may have been seen by various sub-specialists in outpatient clinics. It varies from child to child, depending on the child’s needs and how sick he or she is.
Our philosophy is to involve all the people experienced in the care of children with brain tumors from the very beginning. This means your child will probably be seen by a neurosurgeon, a pediatric oncologist and a radiation oncologist. You and your child also will likely meet with a pediatric neurologist, the Pediatric Psychosocial Team, a nurse practitioner and an educational liaison (school services advocate).
The fact that your child is seen by all these caregivers doesn't’t necessarily mean that he or she will receive treatment and services from all of them. It’s simply part of the process of the team getting to know you and your child so we can make an informed decision about the best possible treatment and supportive care.
Your treatment planning team may include:
Pediatric Neurosurgeon—A pediatric surgeon who specializes in surgery involving the brain or other parts of the nervous system.
Pediatric Radiation Oncologist—A specialist in giving radiation to children with tumors.
Pediatric Oncologist—A specialist in giving chemotherapy to children with tumors.
Neuroradiologist—A specialist in imaging using magnetic fields (MRI) and computerized imaging using x-rays ( CT scan) to diagnose disorders of the nervous system
Pediatric Neurologist - A specialist in function and problems with the brain and spinal cord.
Your support team may include:
Pediatric neurosurgery nurse practitioner—A nurse with an advanced degree who specializes in the care of children who have surgery for a tumor
Pediatric neuro-oncology social worker—A social worker with special training in the care of children who have nervous system disorders
Pediatric psychosocial team—A team that offers a full array of emotional, educational, and social support services to the patient and their families and friends.
Education liaison—A school services advocate
Who’s in Charge?
This is a frequently asked question, particularly around the time of diagnosis when there is so much happening and so many new faces. It’s complicated by the fact that as your child’s treatment and needs change, different physicians and sub-specialists take the lead. Usually around the time of diagnosis, some form of surgery is necessary, and thus the pediatric neurosurgeon is in charge. This may change over time, as your child recovers from surgery and may need other treatments.
At each meeting, we will make clear to you who is in charge, and whom you should call if you have problems or questions.
Treatment Plans are Individualized for Each Child
Your child may receive a single type of therapy or a combination of treatments, depending on the specific nature of your child’s illness. The entire brain tumor team meets to discuss the various treatment options, and will meet with you to discuss options and recommendations, and to monitor your child’s progress.
The main types of care and treatment for brain tumors are:
What Happens at the Clinic?
Before your Clinic visit, the Comprehensive Pediatric Brain Tumor Team meets to discuss your child. During this conference, the neuroradiologist reviews your child’s most recent MRI scans. The team fully discusses any medical, social, emotional, or educational issues your child might have, and develops a plan to address these issues.
Following the team’s discussion, members of the team meet with you and your child. Not every team member sees your child at each visit; only those who are playing a major role in your child’s care at that time will be with you.
Families usually spend about 30-60 minutes at the Clinic. While you’re there, you will have an opportunity to ask questions and offer your observations and thoughts about your child to team members. You will also be able to see your child’s most recent MRI scan.
Following the Clinic, members of the team will meet again to discuss your child’s status that day, and make follow-up plans based on their observations and discussions with you.
Beyond the Medical Diagnosis and Treatment
As difficult as it is to have this diagnosis, there are often other things going on in life that can affect how you deal with this added challenge. That is where the Pediatric Psychosocial Team can be helpful.
The team will meet with you and your family once a diagnosis is made to talk with you about how to get through this difficult time. You will have an opportunity to share issues in your family life that cause you concern and that may make it more difficult for you to concentrate on your child’s treatment. The pediatric psychosocial team can offer support to you and your family, either one-on-one or as a family group. The team can also assist with financial and insurance questions, as well as with specific needs such as housing during treatment and transportation to the hospital.
The education liaison, one of the members of the team, is dedicated to one of your child’s most important needs—his or her education. She confers with the team of physicians and nurses to get a sense of what your child’s treatment will be. She then works with you, your child, and your child’s school to ensure that your child’s education continues with as few interruptions and as much support as possible, making sure the school system understands your child’s needs.
Comprehensive Brain Tumor Clinic
Golisano Children’s Hospital
601 Elmwood Avenue, Box 777
Rochester, NY 14642
Phone: (585) 275-2981