Overview When a child or adolescent has cancer or a blood disorder, parents will do anything and go anywhere to get the best possible treatment. Frequently, the family may feel that they need to travel great distances in order to obtain the best care. However, more and more doctors believe that because pediatric cancer protocols are standardized across the country, the best place to go is to an institution most convenient for the family.
The Pediatric Hematology/Oncology Program at Stony Brook Children's, right here in Suffolk County, meets all of these criteria and more.
It offers the most up-to-date diagnostics and treatments for the majority of children with cancer. The program is led by board-certified pediatric oncologists, backed by the full resources of a tertiary care hospital. It utilizes a comprehensive multidisciplinary family-centered approach that takes into account not just the medical needs but all the issues that come into play during a long illness — flexible scheduling, 24-hour-visiting, family-centered decision-making and the child's emotional and developmental stages. The same is true for children with serious and chronic blood disorders such as hemophilia, von Willebrand’s disease, Sickle Cell Anemia, platelet disorders, and thalassemia. Children receive multidisciplinary, state-of-the-art treatment in a child- and family-centered environment—backed by a full complement of specialists including Child Life, Emergency Department, Social Work, Surgery and any additional specialties that the individual child may need. In addition, whether for cancer and blood disorders, from the time of diagnosis forward, the focus is not just on achieving "cure" but on maximizing the quality of life for the child beyond cure. For residents of Suffolk County, this translates into quality, personalized pediatric cancer care in their own backyards.
School Re-Entry Program
Our Team The Pediatric Oncology Management Team Stony Brook's Pediatric Oncology Management Team has been at the forefront of using a multidisciplinary approach to treat cancer. With the highest patient satisfaction scores at the medical center, it has become a model for other departments.
At its heart, we believe pediatric cancer care needs to be comprehensive in nature yet highly personalized for the patient and family. Following diagnostic testing, a multidisciplinary group of medical experts, which include pediatric oncologists, and pediatric specialists in surgery, radiation oncology, radiology and others disciplines, meet to discuss the patient and make recommendations. The team brings the family into the decision making process so they understand the treatment options and the reasons for the team's recommendations. Of utmost consideration is doing what is right for each individual child.
As the family and child go through treatment, one of the program's four nurse practitioners serves as a nurse navigator. The nurse navigator's role is to coordinate treatment, bring the family through the continuum of care seamlessly, connect the patient and family with other Stony Brook services including social work, nutrition, child life services, clinical psychology, survivorship, bereavement, chaplaincy, physical therapy, or whatever the family needs at the moment. Most important, they are advocates for the patient and family. Upon discharge, the nurse practitioner also participates in coordinating the transition to outpatient care and referral to resources in the community.
The Hematology Management Team The care process for children with serious and chronic blood disorders is identical to that employed for children with cancer in that it is multidisciplinary, patient-centered and focused not just on cure (or control) of the disease but also on maximizing the social and educational development of the child into adulthood. To this end, we work closely with schools and home care agencies to minimize any disruption treatment may have on school, sports and social activities.
Pediatric Hematology/Oncology Nurse Practitioners Debra Giugliano, RN, MS, CPNP, CPON
Services for Children and Adolescents with Cancer and Chronic Blood Disorders: Thanks to medical innovations and new protocols, 75 percent to 80 percent of kids with cancer will survive; children with the most common childhood cancer, acute lymphocytic leukemia, have an 80 percent to 85 percent cure rate. Our goal at Stony Brook Children's is for kids to be cured and to grow up to be healthy, well-adjusted, productive adults. That goal is the over-riding foundation of our pediatric cancer care program.
Since the Pediatric Oncology Program started in 1991, the team has treated hundreds of children with malignant tumors. Our disease-specific cure rates remain at or above the national averages for major childhood cancers such as acute leukemia, brain tumors, lymphoma, neuroblastoma, Wilms tumors of the kidney, and bone and soft tissue sarcomas. Annually, the team sees approximately 1,800 inpatient and 2,200 outpatient encounters.
Advanced Diagnostics Stony Brook offers state-of-the-art diagnostic modalities including molecular diagnostics, and tissue-based and gene-based tests. All of our laboratories are fully accredited by the major accrediting organizations and our technologists are experienced and appropriately certified.
Leading Edge Protocols As a leading pediatric cancer program, and a full member of the Children's Oncology Group (COG), Stony Brook has access to the latest treatment protocols and modalities. Stony Brook can treat all common and most less common cancers in children, including brain tumors, leukemia, lymphomas, neuroblastomas, Wilms tumor, kidney cancer, and sarcomas of soft tissue, muscles and bone. If a child comes to Stony Brook with a rare cancer, we have a worldwide network established and we can comfortably refer the family to the appropriate expert or center better equipped to treat the child.
Treatment may involve one or a combination of the following.
Specialized Treatment for Blood Disorders In addition to treating childhood cancers, Stony Brook offers advanced, comprehensive care for a wide range of blood disorders including:
Many of these program are supported by the Sunrise Fund, which was started at Stony Brook to raise awareness of childhood cancer and to fund specific programs, Stony Brook is also active in other fundraising events, including an annual kids helping kids walkathon. Many of the proceeds fund the educational awards.
Pediatric cancer patients at Stony Brook have the advantage of access to a wide range of research and clinical studies, many of which are promising new treatments that one day may be the standard of care All eligible patients are invited to participate in appropriate clinical trials, but there is no obligation that they do so. Approximately two-thirds of our pediatric cancer patients have been enrolled in clinical trials and other investigational therapies. Stony Brook's rate of clinical trial participation is equal to or greater than national statistics.
Research Highlights: Because it is so important to continue improving therapies and developing new treatments for cancer and blood disorders, ongoing research is a priority at the Department of Hematology/Oncology. We soon will be adding a Clinical Research Associate (CRA) to our team. In addition, we participate in a variety of research projects including:
Basic/Translational Research These studies investigate the biology of cancer. At Stony Brook, we are:
Clinical Treatment Studies As a full member of the Children’s Oncology Group, Stony Brook physicians have access to the most current cutting-edge cancer treatment clinical protocols that explore treatments to increase cure and reduce unwanted late effects of cancer treatment.
In addition, Stony Brook Pediatric Hematology/Oncology physicians are actively involved in studies to better define the underlying biologic basis of childhood cancer and chronic blood disorders such as Fanconi anemia, von Willebrand disease and hemophilia.
Late Effect Studies These studies investigate what happens to the body after a child has completed cancer treatment. Currently we are: * Studying the late effects of cancer therapy on the development of bone mineral loss during therapy (this study encompasses one of the largest groups of such children treated for childhood cancer)
Education Highlights: By facilitating medical education, Stony Brook remains on the leading edge of medicine, continually invigorating its program with fresh viewpoints, a lively exchange of ideas, and the region's next generation of top doctors. Currently both medical students and pediatric residents participate in rotations through the department.
Accreditation All of the team's pediatric surgeons, radiation oncologists and pediatric oncologists are members of the prestigious Children's Oncology Group (COG). Each of the program's Nurse Practitioners and chemotherapy nurses are APON (Association of Pediatric Oncology nurses) accredited.