Pediatric Hematology/Oncology

The Pediatric Hematology/Oncology center at University Hospital provides clinical care to children suffering from the complete spectrum of malignant diseases and various types of blood disorders. This is the only service in New York between Albany and Rochester. In 1995, 58 children and adolescents with newly-diagnosed cancer were seen.

Based in the 5C outpatient area of University Hospital, the service is staffed by six attending physicians, three pediatric nurse practitioners, three registered nurses, a fulltime social worker, a full-time child life specialist, an on-site pharmacist, and a parttime educational specialist. The medical staff are active members in the Pediatric Oncology Group (POG), and, as such, are able to offer the most modern and innovative therapies to children with cancer.

One area of interest is the treatment of brain tumors in pediatric patients. Recognizing the severe toxicity of radiation to developing nervous systems, the Pediatric Hematology/Oncology staff now uses a POG protocol utilizing chemotherapy as a means of delaying, or even completely obviating, the use of ionizing radiation in children less than three years-of-age at the time of diagnosis of their primary brain tumor. Other protocols for older children are combining chemotherapy and radiation in an attempt to improve the overall cure rates. A multidisciplinary pediatric brain Tumor Clinic is held monthly, seeing new patients for consultation, as well as providing long-term follow-up care for patients who have completed their therapy.

Successful treatment of childhood cancer has led to long-term survival rates of greater than 50% of patients, some of whom are now young adults. With long-term survival patients followed in the KNOT (Kids Now Off Therapy) Clinic, the pediatric oncology staff can address the numerous delayed effects of disease and treatment. This program is one of approximately 50 established long-term survivor clinics throughout the country. Late effects of treatment followed in this clinic include impaired physical growth and development, endocrinopathies, cardiomyopathy, infertility, impaired cognitive ability leading to school and vocational difficulties, employment and insurance discrimination and psychological scars. The KNOT Clinic provides specialized attention to a patient population of over 250 that, 30 years ago, did not exist. This clinic is provided through the efforts of a pediatric nurse practitioner, a parttime education specialist, and a pediatric oncology attending physician. The clinic also utilizes the services of numerous pediatric sub-specialists. It has proven to be an essential component of complete patient care.

Families of children with cancer are subject to inordinate stresses. Just as important as up-to-date medical treatment for the patient is the provision of emotional and social support for the patient and family. The pediatric oncology social worker serves an important role in this regard as a member of the comprehensive team effort. The fulltime child life specialist (funded by the Central New York Ronald McDonald House) is equally important, in that this individual is specifically trained to work with children using play therapy and other techniques to facilitate each child's adaptation to the procedures needed in his or her treatment. In addition, families from out of town are encouraged to stay at the nearby Ronald McDonald House for as long as necessary while their child is hospitalized or receiving daily outpatient treatment. The warm and supportive environment of the house is an extension of the services provided on site at University Hospital.

The PROP (Parents' Reach-Out Project) Group, organized by parents, is a peer group which provides emotional support for families and serves as a forum for various educational activities. Adolescent patients are encouraged to participate in support group meetings supervised by the social worker. This year, the position of a part-time PROP Group parent advocate was established. The individual working in this role publishes a monthly newsletter which is sent to approximately 350 families as well as outside support organization, oversees the weekly PROP coffee meetings during which parents have the opportunity to meet and share common experiences and concerns, integrates new families into the routine of having a child with cancer, keeps the most up-to-date information available in the PROP library, and deals with other issues of concern to parents, that arise within the Pediatric Hematology/Oncology Division, the Department of Pediatrics, and the hospital in general.

In August 1996, a dedicated inpatient unit was opened on the 7th floor of University Hospital. This unit, known as 7H, is staffed by specially trained nurses, and provides a centralized, comprehensive care area for pediatric hematology/oncology inpatients.

In summary, the pediatric hematology/oncology service at University Hospital is able to provide comprehensive medical care and psychosocial support for virtually all children and adolescents with malignant disease and their families.

Ronald Dubowy, M.D., Director