Pediatrics
Comprehensive Cancer Care for Infants, Children, and Teens
Accurate Diagnosis and Imaging
Support Teams Improve Quality of Life
Liaison Activities, Therapeutic and Research Affiliations
Active Protocols (Updated September 2002)
Conferences and Boards Facilitate Optimal Treatment
Educational and Research Conferences
Childhood Cancer Facts
Signs and Symptoms of Childhood Cancer The Cancer Program at Children's Hospital and Regional Medical Center in Seattle Washington provides comprehensive care to children with cancer. We follow over 3,700 children and plan and implement care for approximately 200 children with newly diagnosed cancer each year. Most of our young patients live in the Northwestern United States, but they also come to us from other regions and other countries. The quality of Children's Cancer Program is reflected in the high caliber and dedication of our staff, our state of the art treatment and research facilities, our good standing with the Joint Commission on Accreditation of Health Care Organizations and the Commission on Cancer, and our active participation in Childrens Oncology Group. Children's is a partner in the Seattle Cancer Care Alliance, together with Fred Hutchinson Cancer Research Center, and the University of Washington Medical Center. The Alliance is a gold standard for highly integrated cancer research and treatment, providing cancer patients in the Northwestern United States with rapid access to the best cancer treatment available. We are one of just 9 centers selected to participate in the Pediatric Brain Tumor Consortium, which is dedicated to pursuing new and novel therapeutic and diagnostic avenues to improve survival for children with brain tumors. Throughout 2001, our strong commitment to providing excellent cancer care to children was demonstrated by our ongoing partnership in the Seattle Cancer Care Alliance and by our participation in Childrens Oncology Group and the Pediatric Brain Tumor Consortium. We added a new level of care to this equation during the year, with the addition of a formalized long term follow up clinic known by the acronym ACCESS (After Cancer Care Ends Survivorship Starts). 2001 was filled with opportunities to measure the quality and extent of our services, with survey visits from both the Joint Commission and the Commission on Cancer. In both instances, we found we measured up very well against the rigorous standards of these organizations. Improvements to our regional service brought improved care to cancer patients throughout the northwestern United States by making our experts more readily available to their local physicians via teleconferences and outreach visits, with continued expansion planned in 2002. The goals of our Cancer Program are to: Our inpatient service will be enhanced in 2002 through the addition of radioactive iodine (I-131) therapy for patients with thyroid cancer who formerly needed to receive that therapy elsewhere. In the outpatient setting, the ACCESS program will continue to establish relationships with more and more adult and pediatric specialties. Our tumor boards and educational conferences will benefit during 2002 from upgraded telemedicine services, offering better sound quality and the capacity for viewing digital images. Physicians refer their young patients to us because of our advanced diagnostic and treatment technologies, our state of the art protocols and our specialized pediatric medical and nursing skills. Our comprehensive multidisciplinary management of childhood cancer helps the families of children with cancer regain their hope for a long and bright future. Our multidisciplinary pediatric cancer team provides a unified approach to cancer care in dedicated inpatient and outpatient units and weekly clinics for neuro-oncology and for bone and soft tumor patients. The pediatric team includes: Other disciplines involved as needed include child psychiatry; adolescent medicine; stress management; chaplaincy and community agencies or groups. The dedication of our cancer team brings a special quality of care to our patients. Our multidisciplinary approach to cancer treatment offers real advantages to children and teens with cancer. We offer a broad range of chemotherapeutic agents and protocols to our patients in both inpatient and outpatient settings. Whenever possible, our patients are treated with the Childrens Oncology Group protocols our own institutional review board has approved for use. These protocols include investigational therapy or drugs when there are no effective standard therapies for a given diagnosis. A diverse group of experienced specialists, all present in one location and all focused on the care of children, allows us to deliver the most effective, most efficient treatments. Our bone marrow transplant patients benefit from having their care team specialize not only in bone marrow and stem cell transplantation, but in providing these therapies to children. The team's extensive experience enables them to provide compassionate, responsive expert care from the time they first see each patient throughout their follow up. Pediatric surgeons from all major surgical specialties are on staff at Children's Hospital. Neurosurgery, transplant surgery, and limb-salvage orthopedic surgery represent a few of these specialties that are uniquely available at CHRMC. Pediatric General and Thoracic Surgeons use minimally invasive surgery whenever possible to diagnose and treat pediatric cancer. Pediatric experts in imaging, radiology, and surgery work with our pediatric pathologists to make accurate diagnoses from a minimum of tissue, reducing physical trauma and emotional distress. Tumor resection by minimally invasive techniques such as thoracoscopy or laparoscopy are often made possible by neoadjuvant, or "up-front," chemotherapy, which can reduce tumor size. These approaches can decrease morbidity, shorten recovery, improve long-term survival and improve the quality of life for survivors of childhood cancer. The Pediatric Bone and Soft Tissue Sarcoma Tumor Service brings high-quality care to children and adolescents with musculoskeletal tumors. Metabolic imaging methods, such as positron emission tomography (PET) have improved our ability to evaluate musculoskeletal malignancies, including their response to neoadjuvant chemotherapy. Our bone transplantation and skeletal reconstruction procedures leave patients with more function than older techniques did. The Pediatric Neurosurgical Oncology Service provides leading-edge technology to patients with brain or spinal cord tumors. Functional brain mapping and electrocorticography is used when a tumor is close to language or motor areas or is causing seizures. The Pediatric Neurosurgical Service also uses state-of-the-art frameless stereotactic equipment and microscope and laser equipment. Radiation therapy is available to our patients through our affiliation with the University of Washington Radiation Oncology Center, which offers state-of-the-art treatment technologies including: 3-D conformal treatment planning; Gammaknife stereotactic radiosurgery; and both permanent and temporary brachytherapy implants. A board certified pediatric radiation oncologist participates in our Tumor Boards, providing continuity of care for our patients who receive radiation therapy at the University of Washington Medical Center. I-131 radiolabelled antibody therapy will become available on Children's inpatient service during 2002. Long term follow up care is provided to our cancer survivors through our ACCESS (After Cancer Care Ends Survivorship Starts) program. This program is designed to meet the unique health care needs of long-term survivors of childhood cancer and their families. It focuses on health promotion and prevention. ACCESS addresses potential risks of developing complications secondary to childhood cancer and its treatments. A variety of long term effects have been observed which may interfere with various organ systems, psychological well-being and quality of life. For most survivors, these late effects are not serious, but are important to monitor. With education, intervention and empowerment, survivors can take charge of their health and manage these problems. The services provided by the Laboratory and Radiology departments are essential to clinicians treating cancer patients. These two departments offer our patients the most specific and effective cancer diagnostics available. Precise tumor diagnosis is essential when planning therapy and evaluating treatment effectiveness. Board-certified pediatric pathologists provide fully integrated and comprehensive diagnostic services, including histology, histochemistry, electron microscopy, cytology, and immunocytochemistry. These techniques may be supplemented with prognostic information obtained at Children's from classical cytogenetics, fluorescent in-situ-hybridization, comparative genomic hybridization, flow cytometry, cell cycle analysis, and molecular genetic techniques. These same pathologists have an active weekly role in our tumor board and daily contact with the oncologists on service. Magnetic resonance imaging, CT scanning, ultrasonography and nuclear medicine and radiography are integral components of clinical staging and pre-treatment planning for patients with solid tumors. These technologies are also used to monitor response to therapy. Children's radiologists are all board-certified diagnostic radiologists and pediatric radiologists. Interventional radiology provides image guided diagnosis and therapy including chemo-embolization and radiofrequency ablation, as well as supportive care. Nuclear radiology, in concert with our oncologists, have developed a cutting edge monoclonal antibody treatment program. Pain management is integral to our Cancer Program. The Department of Anesthesiology's Pain Management Service provides brief general anesthetics for several diagnostic and therapeutic procedures, especially for newly diagnosed and younger children. Pain management specialists also help patients learn non-pharmacologic strategies for minimizing the distress of procedures. The Pain Management Service is available for inpatient and outpatient consultation and treatment of cancer-related pain. The Pain Management Service often joins Hematology/Oncology rounds to facilitate patient care and teaching. Psychosocial support is offered to all patients and their families. Social workers support our patients and their families by providing resource information and referrals, crisis intervention and short-term counseling. Social workers keep the team informed of important psychosocial issues facing patients or their families. They support the medical team as well by providing relevant psychosocial training and offering grief counseling. Social workers participate in and promote local outpatient support groups for families of children with cancer. Through the American Cancer Society's Camp Goodtimes Child Life Specialists use play to help children cope with the hospital experience. These important members of the Hematology/Oncology team focus on minimizing stress and anxiety for our patients. By providing therapeutic and normalizing play opportunities, particularly medical play, the Child Life Specialist encourages the expression of feelings and promotes a sense of mastery and understanding of medical procedures. The Child Life Specialist works closely with parents and other caregivers, teaching supportive techniques for children during hospitalization, clinic visits, and invasive procedures. Examples of these techniques include supportive positioning, procedural preparation/medical play, distraction, and relaxation techniques. Physical and occupational therapy can make a lifetime of difference to the child experiencing motor difficulties caused by cancer or its treatment. Both services are in inpatient and outpatient settings. Physical therapy goals include restoring lower-extremity range of motion and strength, balance, mobility and endurance. Ambulation, gait, developmental skills and gross motor skills are also evaluated and treated. Occupational therapy focuses on fine motor skills, upper extremity range of motion, age-appropriate self-care, feeding skills and swallowing skills. Therapy may include obtaining equipment such as a modified toilet seat or a bath bench to allow patients greater independence. The Hematology/Oncology nutrition team's role of assessing and monitoring patients' nutrition status during cancer treatment is crucial. The clinical dietitian is vital to our patients' successful completion of cancer treatment because these children are at high risk for malnutrition due to the intense chemotherapy and radiation regimens. The dietitian helps determine appropriate nutrition support therapies, which may be as simple as high-calorie milkshakes or as complex as total parenteral nutrition. The dietitian also helps determine if a feeding tube is needed to augment oral intake. The goal of nutrition intervention in cancer treatment is to maximize the patients' quality of life by preventing or minimizing nutritional deficits. Providing optimal nutrition support therapies to children undergoing cancer treatment allows for normal growth and development and minimizes the malnutrition that can occur from cancer treatment. Children's, together with Fred Hutchinson Cancer Research Center and the University of Washington Medical Center, is a partner in the Seattle Cancer Care Alliance. The mission of the Pediatric Program of the Seattle Cancer Care Alliance is to provide outstanding clinical services consistent with the values of all three organizations, and to assure that patients with hematologic and oncologic disorders have rapid access to the best treatment available. The program's focus is: Our affiliation with the University of Washington Medical Center also includes the School of Medicine As a member of Childrens Oncology Group The American College of Surgeons We are one of approximately 1,000 hospitals which participate in the Commission on Cancer's National Cancer Data Base (NCDB). NCDB is an annual report compiled by the Commission on Cancer and produced by the American Cancer Society. The report contains demographic information on cancer. Clinical studies offering the best therapy currently available are crucial in improving the treatment of childhood cancer. We continue to improve treatment based on what we learn from our young patients' progress through their acute care and through follow-up in ensuing years. Children's participates in studies sponsored by the hospital; by national organizations such as Childrens Oncology Group The goal of Childrens Oncology Group is to increase survival and cure rates. This goal is pursued through cooperative clinical trials of newly developed therapies, which include combinations of surgery, radiation therapy, chemotherapy, immunotherapy, and bone marrow transplantation. COG is an organization of pediatric oncology specialists associated with major medical centers. As a COG member, we investigate the natural history, treatment and epidemiology of childhood cancer. In collaboration with other COG members, new treatment protocols have been developed, which have dramatically improved disease-free and long-term survival for pediatric cancer patients. Patients are always offered the choice to enroll in an open study when one is available. Whether a study is open or not for a particular diagnosis, we always offer the current standard of care for pediatric cancer. Children's is involved in Phase I, II, and III clinical trials: Phase I trials offer innovative but unproven treatments to patients who have advanced cancer that has not responded to conventional treatment. These studies are vital in determining the feasibility of new drug treatment regimens as they relate to childhood cancers, which differ from adult cancers and must be treated differently. Phase II trials test new single-agent treatment regimens and multi-agent treatment combinations against specific cancers. Trials demonstrating sufficient activity and acceptable toxicity levels are tested in Phase III trials. Phase III trials contrast two or more proven therapies to compare effectiveness; they are the last step in evaluating a new treatment approach. A new treatment program that does well during a Phase III trial becomes a standard Leukemia Studies: Four protocols are open for Acute Lymphoblastic Leukemia (ALL). Two protocols are open for Acute Non-Lymphoblastic Leukemia (ANLL), Acute Myelogenous Leukemia (AML), or Myelodysplastic Syndrome (MDS). Brain Tumor Studies: Fourteen protocols are open for various childhood central nervous system malignancies including Astrocytoma, Medulloblastoma, and Intracranial Ependymoma. Soft Tissue Sarcoma Studies: Eleven protocols are open for soft tissue sarcomas including Rhabdomyosarcoma. Bone Tumor Studies: Two protocols are open for patients with Osteosarcoma or Ewing Sarcoma. Lymphoma Studies: Three protocols are open for Hodgkin and Non-Hodgkin Lymphomas. Neuroblastoma Studies: Six protocols are open for Advanced Stage, Intermediate Risk, and Low Risk Neuroblastoma. Hepatoblastoma Studies: One study is open for Hepatoblastoma. New Agent Studies: Twenty-seven protocols are open that explore the use of investigational drugs to treat childhood cancer. Biology Studies: Twelve protocols are open that look at the characteristics, genetics, and markers of tumor cell specimens. Epidemiology, Late Effects and Quality of Life Studies: Thirteen open studies explore the causes and late effects of childhood cancer. Our Long Term Follow-Up study follows several hundred patients who have participated in a number of different research studies. One study is open which assesses the quality of life in survivors of childhood cancer. Another open study seeks to improve access and quality of care for children at the end of life. Children's Tumor Board consults on regional and international cases. Pediatric oncologists from multiple locations in the northwestern states participate in our tumor boards by teleconference. Multidisciplinary general, brain and bone tumor boards meet weekly to provide consultative and educational services to the medical staff. The ultimate treatment decision rests with the primary care physician, who synthesizes the various opinions and determines the most appropriate management for the patient. How Physicians Can Request a Tumor Board Consult To request a tumor board consult, contact any physician involved in our cancer program, or email the cancer registrar. Physicians are welcome to join the tumor board's discussion in person or by teleconference from participating locations. We request the following patient information and material on consult cases: Phone Numbers (206) 987-2106 To speak with a physician during business hours (206) 987-2086 To speak with the Cancer Registrar Tumor Board Schedule For consult cases, we need to have outside slides and scans, with reports, delivered by the day before the tumor board where the case is to be discussed. This gives our Radiologists and Pathologists time to review them carefully. The Hematology/Oncology Division holds clinically oriented weekly teaching and research conferences for physicians, nurses and staff caring for children with cancer. Protocol Priorities Conference This weekly conference, attended by pediatric oncology physicians and multidisciplinary staff, is dedicated to making the most current cancer treatment available to our patients. A decision to participate in a study is based on stringent review of many factors, such as: Surgery Department Conference A weekly conference regarding cancer patients requiring surgery. Treatment planning and integration of surgery with other treatment modalities are discussed. The Cancer Registry has been collecting demographic and treatment information on our cancer patients since December 1946. At the end of 2001, the registry contained data on nearly 6,000 cases, of which 229 were new to us during 2001. The most common group of cancer seen among our patients is brain tumors, followed by leukemias. See a table showing the distribution of cancer diagnoses in 2001, "What types of cancers do our patients have?" We check on the health status of our cancer patients annually throughout their lifetime. This provides continued medical surveillance and quality research data. We have current follow-up information on more than 90 percent of the patients first seen since our January 1987 Commission on Cancer reference date. In 2001 the Cancer Registry responded to 96 requests for cancer reports and statistics. These reports and statistics are used for research, publication, education, grant applications and quality assurance. Our registry works closely with the Cancer Surveillance System (CSS), a regional population-based registry. CSS is an activity of the Epidemiology Program within Fred Hutchinson Cancer Research Center. Through the Survival, Epidemiology, and End Results (SEER) Program of the National Cancer Institute, CSS is one of 11 regional registries throughout the US. CSS is also the contracted regional representative for the Washington State Cancer Registry Stage distribution over the past decade seems to show a trend toward diagnosis at an earlier stage. However it is unclear if this is the case, or if this represents a shift in referral patterns (see graph "Are we finding cancer at an earlier stage?"). The five-year survival rate for our patients diagnosed from 1985-1998 is 78%, comparing favorably with a national survival rate of 75% reported by the SEER Program. Diagnosis-specific five-year survival for our patients exceeds rates reported by SEER (see graph "More of our patients survive, compared to national averages."). A Note From Our Chairman
J. Russell Geyer, M.D.
Comprehensive Cancer Care for Infants, Children, and Teens
Accurate Diagnosis and Imaging
Support Teams Improve Quality of Life
, our cancer patient and their siblings are given the opportunity to have loads of fun at a one week Summer camp. Bereavement support is offered through our Journey Program, and bereavement support groups are administered by the Seattle chapter of the Washington Candlelighters.Liaison Activities, Therapeutic and Research Affiliations
. Medical students, residents and fellows in Pediatrics, Surgery and Oncology participate in every aspect of caring for the child with cancer. (COG), we participate with other pediatric cancer programs in protocols to improve survival and treatment outcomes for children with cancer. Commission on Cancer sets high standards for cancer programs. Children's Cancer Program complies with these standards. The Commission on Cancer surveys our Cancer Program regularly to assess our compliance with their standards.Clinical Trials
, the Pediatric Brain Tumor Consortium, the National Cancer Institute; or by pharmaceutical companies. Our Clinical Research Associates are responsible for collecting and reporting the documentation of these investigations, and for coordinating their work with the nursing and medical staff.
Active Protocols (Updated September 2002)
Conferences and Boards Facilitate Optimal Treatment
General Tumor Board: Tuesdays from 12:30PM to 1:30PM
Brain Tumor Board: Tuesdays from 1:30PM to 2:30PMEducational and Research Conferences
Cancer Registry
.Childhood Cancer Facts
(Courtesy of American Cancer Society)
Although childhood cancer is rare, an estimated 8,600 children and young people were diagnosed with cancer in the year 2001. Despite steady advances in treatment, approximately 1,500 children died of cancer during 2001. Cancer is the most common cause of death by disease in children between the ages of 1 and 14. Mortality rates from childhood cancer have fallen by 50% since 1973. This decrease results from improvements in survival for most childhood cancers.
Examples of the major cancers seen in childhood are:
- Leukemia, usually the acute lymphoblastic variety
- Bone sarcomas such as osteosarcoma and Ewing's Sarcoma
- Neuroblastoma
- Rhabdomyosarcoma is the most common soft tissue sarcoma
- Brain tumors of various types
- Lymphoma and Hodgkin's Disease
- Wilms Tumor
Signs and Symptoms of Childhood Cancer
(Courtesy of American Cancer Society of Ohio's Franklin County Unit)Early detection of childhood cancer can be difficult. Physicians can help parents by encouraging them to bring their children in for regular checkups and to watch for unusual and persistent symptoms. These include:
C ontinued, unexplained weight loss H eadaches with vomiting in the morning I ncreased swelling or persistent pain in bones or joints L ump or mass in abdomen, neck or elsewhere D evelopment of a whitish appearance in the pupil of the eye R ecurrent fevers not due to infections E xcessive bruising or bleeding N oticeable paleness or prolonged tiredness
2001 Cancer Committee Members
| Cara Bailey, Administrator, Systems & Logistics |
CQI Steering Committee |
| Joanie Blanchard, RN, 3B Clinical Manger |
Hem/Onc Inpatient Clinical Staff |
| E. Chappie Conrad, M.D., Orthopedic Surgeon |
Musculoskeletal Oncology |
| Jay Douglas, M.D., Pediatric Radiation Oncologist |
University of Washington Medical Center Radiation Oncology |
| Richard Ellenbogen, M.D., Chief, Department of Neurosurgery |
Department of Neurosurgery, University of Washington, School of Medicine |
| Debra Friedman, M.D., Hematologist/Oncologist & Physician Advisor to the Cancer Registry |
Hematology/Oncology Physicians |
| Susan Geiduschek, RN, MN, Hematology/Oncology Program Director |
Hematology/Oncology Administration & Hem/Onc CQI |
| J. Russell Geyer, M.D., Hematologist/Oncologist/Neuro-oncologist, Cancer Program Chairman |
Hematology/Oncology and Neuro Oncology Programs |
| Richard Grady, M.D., Urologist |
Urology |
| Douglas Hawkins, M.D., Hematologist/Oncologist |
Hematology/Oncology Physicians |
| Theresa Hayden, CTR, BHA, Cancer Registrar |
Cancer Registry |
| Susan Heath, Administrator |
Medical Administration |
| Kathy Hunt, RD, Hematology/Oncology Nutritionist |
Nutrition Services |
| Kenneth Jaffe, M.D., Director of Rehabilitation Medicine |
Rehabilitation Medicine |
| Jennifer McDonald, Hematology/Oncology Institutional Review Board Coordinator |
Hematology/Oncology Research |
| Richard Molteni, M.D., VP & Medical Director |
Medical Administration, Medical Executive Committee |
| Kathleen O'Neill, RN, Research Coordinator |
Hematology/Oncology Research |
| Kathleen Patterson, M.D., Pathologist |
Pathology |
| Thomas W. Pendergrass, MD, MSPH, Director of Medical Education |
Pediatrics, Family Practice and Community Physicians |
| Mary Jeanne Phipps, MSW, Hematology/Oncology Social Worker |
Hematology/Oncology Social Work Services |
| Jean Sanders, M.D., Pediatric Bone Marrow Transplant Physician & Director of Pediatric Bone Marrow Transplant Program |
Pediatric Bone Marrow Transplant Program |
| Robert Sawin, M.D., Chief of General & Thoracic Surgery, American College of Surgeons Cancer Liaison Physician |
Surgery, American College of Surgeons Commission on Cancer |
| Robert Schaller, M.D., Surgeon |
Surgery |
| Dennis Shaw, M.D., Interventional Radiologist |
Radiology |
| Winter, Laura, Pharmacist |
Pharmacy |
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