Your Brain Tumor Team

Transcription

1 Patient and Family Education Your Brain Tumor Team If your child has a brain tumor, you have a whole team at Seattle Children s. The Seattle Children s Brain Tumor Program is made of a team of professionals from many different fields working together, called a multidisciplinary team. You share in the expertise of many healthcare providers. Whether the tumor is considered benign (not cancer) or malignant (cancer), all children, adolescents and young adults who have a tumor of the brain or spinal cord may receive care from our team. Meet the Team Nurse coordinator A nurse with expertise in coordination of care. The nurse is your primary source of education about your child s care. The nurse coordinator is a good person to call when you re not sure who to call. Stacey Leptich, RN Social workers Skilled counselors who give families emotional support from diagnosis through care and recovery. They coordinate care between families, the community and the medical team, and help families get the resources they need. Cynthia Turrietta, LICSW Nurse practitioners Registered nurses with advanced training and education. They practice independently and work closely with doctors to diagnose, treat and teach patients and families about serious and chronic conditions. Nurse practitioners may see your child in the hospital or for clinic visits. Cory Hoeppner, Brain Tumor Nurse Practitioner Susan Holtzclaw, Brain Tumor Nurse Practitioner Amanda Breedt, Casey Henson, Maura Hamilton, MS, CPNP-PC/AC Lindsey Price, Claire Reilly- Shapiro, Laura Zapata, 1 of 5

2 Pediatric Neuro-Oncologists Doctors who have specialty training in pediatrics, sub-specialty training in hematology and oncology (blood and cancer), and further focus specifically in brain tumors, including benign (not cancer) and malignant (cancerous) brain tumors. Russ Geyer, Sarah Leary, Jim Olson,, PhD Nicholas Vitanza, Neurosurgeons Doctors who have specialty training in neuro (brain) surgery, with additional training in pediatric brain surgery. Each year, our neurosurgery team includes a fellow, a licensed doctor who has completed neurosurgery training and is working with our group to gain further pediatric specialty experience. Rich Ellenbogen, Jeff Ojemann, Sam Browd, Jason Hauptman, Manny Ferreira, Amy Lee, Peter Chiarelli, Fellow (July 2017-June 2018) Radiation Oncologists Doctors who have specialty training in the use of radiation therapy to treat cancer, tumors and other diseases. Ralph Ermoian, Neurologists Doctors who have specialty training in neurology (study of the brain), including the treatment of diseases of the nervous system such as headaches, seizures, nerve pain and movement disorders. Peter Kollros, Juliane Gust, Jonathan Lopez, Rehabilitation Medicine Physicians Doctors who have specialty training in rehabilitation medicine regaining strength and function after illness or injury. Ross Hays, Elaine Tsao, 2 of 5

3 Neuropsychologists Doctors of psychology with expertise in the evaluation of higher brain functions such as learning, memory, mood, and coping with illness or injury. Neuropsychologists are particularly helpful with preparing your child for school and arranging classroom accommodations. David Breiger, PhD Joanna Patten, PsyD Samuel Larson, PhD Jesse Bledsoe, PhD Endocrinologists Pediatricians who specialize in hormonal regulation of the body, including pituitary gland function. Cate Pihoker, Christian Roth, David Werny,, MPH Cancer Survivor Program Doctors (oncologists) and a pediatric nurse practitioner who follow each survivor to check on their health, discuss possible long-term side effects from treatment and offer ways to stay healthy. Registered Dietitians Professionals who provide individual dietary assessment and recommendations to maximize health and growth during medical treatment. Eric Chow, Amy Wein, ARNP Alix Strickland, Clinical Dietician Child Life Specialists Professionals who work with children and families to help relieve tension, express concerns and fears, and feel more in control about their medical experience. Alicia Sevilla, MS, CCLS Erin Behen, MS, CCLS Genetic Counselor Genetic specialists trained in counseling who will review family health history, inheritance and results of genetic testing. Shannon Stasi, MS, LCGC 3 of 5

4 Research Coordinator A clinical research coordinator with expertise in coordination of research within our brain tumor team. The coordinator meets with families to discuss our research program. Jeff Stevens, Clinical Research Associate Medical Assistants Medical assistants are your point of contact during the clinic visit. They will greet you, take you to your room and take the patient s height, weight and vital signs. They also will let you know which providers you will see for the day. Catherine Story, MA Family Service Coordinators They coordinate and schedule appointments including clinic visits, MRI appointments, lab visits, infusions and consultations. Scheduling is done directly through Cancer and Blood Disorders. Andria Clark, FSC Research Many members of our team lead studies that help us and researchers around the world learn more about tumors in children and improve treatment. All children with tumors, whether cancer or not, are eligible to participate in banking and registry studies. Participating in research is always optional. Other providers There are also people working with our group behind the scenes such as radiologists (doctors with specialty training in radiology and the interpretation of images such as MRI) and pathologists (doctors with specialty training in pathology, the microscopic diagnosis of disease). Patients and Families We recognize you know your child best. Patients and families are critical members of the care team and we want to partner with you to accomplish treatment and goals. We realize that each child is unique. We attend to your child's individual medical, social, physical, emotional, pain, nutritional and educational needs. 4 of 5

5 To Learn More Brain Tumor Clinic org/brain-tumor Ask your child s healthcare provider Free Interpreter Services In the hospital, ask your child s nurse. From outside the hospital, call the toll-free Family Interpreting Line Tell the interpreter the name or extension you need. Wednesday Brain Tumor Clinic Brain Tumor Clinic is held on Wednesday of every week. It is a time when team members meet to see your child together. At most clinic visits, your child will not see all members of the team only those they need to see or those you request to see that day. Brain Tumor Board We have a special meeting where are whole team meets to talk about our patients with brain and/or spinal tumors. This is called our Brain Tumor Board. At this meeting, we review all information on your child, including health records, tests, images and pathology. We develop your child s diagnosis and treatment plan. We then talk about the plan with you after the meeting. Together, we build the best care plan for your child. Who to call for medical concerns For urgent issues such as fever or other signs of illness Between 8 a.m. and 5 p.m. on weekdays, call the Cancer and Blood Disorders Center at and ask for the clinic nurse. Before 8 a.m. and after 5 p.m., and on weekends and holidays, call the paging operator at and ask for the Cancer and Blood Disorders Center fellow on call. For wound/shunt/specific surgical concerns or within the first two weeks after surgery Call the paging operator at and ask for on call. Other important numbers Cancer and Blood Disorders Center including triage nurse: General non-urgent questions: Stacey Leptich, RN Cory Hoeppner, ARNP Susan Holtzclaw, ARNP Housing, school, work, insurance forms or concerns: Cynthia Turrietta, LICSW Brain Tumor Clinic scheduling: , option 1 General Seattle Children's scheduling outside of Brain Tumor Clinic: and ask for the specific clinic you need Seattle Children s offers interpreter services for Deaf, hard of hearing or non-english speaking patients, family members and legal representatives free of charge. Seattle Children s will make this information available in alternate formats upon request. Call the Family Resource Center at This handout has been reviewed by clinical staff at Seattle Children s. However, your child s needs are unique. Before you act or rely upon this information, please talk with your child s healthcare provider Seattle Children s, Seattle, Washington. All rights reserved. Cancer and Blood Disorders 12/17 PE of 5