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The Robert H. Lurie Comprehensive Cancer Center of Northwestern University
Chicago, Illinois
Administrative Office: 312.908.5250
Patient Referrals: 866.LURIECC (587.4322)

www.cancer.northwestern.edu

Pediatric Oncology Services

Introduction

The Robert H. Lurie Comprehensive Cancer Center is affiliated with Children's Memorial Hospital Center for Cancer and Blood Disorders, one of the nation's leading pediatric hospitals. The American College of Surgeons, Commission on Cancer Approved pediatric oncology program offers a family-centered, multidisciplinary approach and provides the highest quality diagnostic and treatment services for children and adolescents with leukemia, tumors of the brain and spinal cord, and other solid tumors. Oncology specialists are recognized around the world for their knowledge and expertise. The Transplantation Center has attracted national and international medical and surgical leaders. The philosophy is to treat the "whole child" through a multidisciplinary approach involving caregivers from many related fields. The Brain Tumor Center at Children's Memorial is among the first institutions in the country to develop a cohesive, multidisciplinary program with support from specialists in more than 33 pediatric and surgical subspecialties. Children's Memorial provides a warm and nurturing, educational, and recreational environment that allows "kids to be kids" as they undergo treatment.

The pediatric oncologists have expertise in the management of all childhood cancers and are world-renowned experts in the areas listed below:

Special Expertise

· Brain Tumor

· Leukemia

· Liver Tumor

· Wilms' Tumor

· Lymphoma

· Neuroblastoma

· Radiation Oncology

· Retinoblastoma

· Soft Tissue Sarcoma

· Long-Term Follow-up (Survivorship)

· Stem Cell Transplantation

General Information

Ages Treated

The majority of our patients are 18 years of age and younger, but we do provide care for young adults with pediatric diagnosis and congenital disorders.

Pediatric Hot Line

800.KIDS.DOC (800.543.7362)

Children's pediatric nurses are available Monday through Friday from 8:30 AM to 4:30 PM to personally answer questions. When calling at other times, please press * to leave a message and Children's will call back.

Referring Physician Line

800.540.4131

E-mail

KIDSDOC@childrensmemorial.org (All e-mails are answered within 72 hours.)

Location

Children's Memorial Hospital is located at

2300 Children's Plaza
Chicago, Illinois 60614-3394

The main telephone number is 773.880.4000.

Physical Plant

The 22-bed unit is specially designed, staffed, and equipped to deliver the most sophisticated level of treatment to children of all ages, and includes a six bed stem cell unit for inpatients. Each room has intensive care monitoring capabilities. To assist with infection control, the unit maintains its own water and air filtration system. There is a playroom and parent lounge located on the inpatient unit.

Outpatient care is provided in an attached Ambulatory Care Center , that includes, a 14-bed Chicago White Sox Day Hospital used for chemotherapy and other infusions, and a dedicated hematology laboratory.

Radiation Oncology is located two miles southeast of Children's Memorial at the main Northwestern campus.

The Brown Family Life Center is a respite area devoted to inpatients and their families. The colorful curving walls, aquarium, and central skylight were designed to be a family-friendly distraction from hospital life. The center is equipped with toys, games, and computers and is the focal point of many Child Life activities for patients.

Travel Assistance

Social work staff provides travel assistance and coordinates transportation. United Airlines assists by providing free or substantially discounted tickets for patients and family members on a case-by-case basis. The oncology program also employs a Resource Specialist who meets many of the families to assist with the aforementioned needs.

Lodging

The Ronald McDonald House near Children's Memorial Hospital provides a temporary "home away from home" for families of children receiving treatment. The 21-bed facility is the second oldest Ronald McDonald House in the nation and is conveniently located two blocks from the hospital. For more information, call the House at 773.348.5322.

Families of children undergoing stem cell transplantation also have access to the Kohl's House, which is specifically designed for transplant patients and their families. This eight-bed facility is located a half block from the hospital and is available for all patients undergoing transplantation. Social workers can assist families with reservations and admissions. Kohl's House Guest Relations can be reached at 773.975.8881.

Children's Admitting Department can help make arrangements for hotel accommodations within the area. The Admitting Department can be reached at 773.880.4700.

Social workers also assist in lodging arrangements for families.

Social Support

Family Support Services, consisting of clinical social workers, child-life specialists, a chaplain, and Parentwise coordinator, addresses the psychosocial needs of pediatric cancer patients and their family and are a core part of the multidisciplinary team.

Social workers provide assistance in helping families cope with a child's illness hospitalization and treatment. Social workers also provide information and referrals to community agencies and other services focused on child and family well-being.

Certified child life specialists are trained professionals who promote effective coping through play, preparation, education, and self-expression activities. They provide emotional support for families, and encourage optimum development of children facing a broad range of challenging experiences, particularly those related to healthcare and hospitalization. Child life specialists utilize a family-centered care model that views the child's coping within the framework of a larger family system so there is also a focus on providing support and guidance to parents, siblings, and other family members. They also play a vital role in educating caregivers, administrators, and the general public about the needs of children under stress. Children's Memorial Hospital currently has two Child Life Specialists dedicated to serving Hematology/Oncology patients, providing services in both the inpatient and outpatient settings. On a daily basis, the Child Life Specialists can be seen providing preparation and distraction prior to painful procedures or engaging patients in age-appropriate teaching sessions and medical play opportunities to help a child understand and cope with a new diagnosis and the treatments that will occur. The same sessions are offered to siblings to clarify any misconceptions or fears that may exist, while also validating the unique aspects and emotions that go along with being the sibling of a pediatric patient. The Hematology/Oncology Child Life professionals facilitate therapeutic activities that promote an open expression of emotions, thoughts, or concerns relating to each individual's experience of chronic and life-threatening illness as well as introducing non-pharmacological techniques to help with pain management, implementing strategies to help with non-compliance/behavioral modification, and providing support to patients and siblings relating to end-of-life issues.

School services staff (including school teachers from both Chicago public and suburban school districts can provide educational instruction to a patient during inpatient hospitalizations and during extended outpatient treatment days. Tutoring and educational enrichment programs are also available.

Supportive services for the patient, parents, and family are also available through the following:

  • ParentWise
  • Palliative Care Program
  • Heartlight (Bereavement Program)

There are also a number of cancer wellness centers in the community which offer supportive and educational services to those impacted by cancer. Most, if not all, of their services are free of charge.

Financial Assistance

The need for financial assistance is evaluated on a case-by-case basis.

For more information, call 773.880.4273.

For questions about financial coverage while a child is in the hospital, call Monday through Friday, 7:00 AM to 6:00 PM; Saturday, 7:00 AM to 3:30 PM.

Home Health Care

The teams work closely with home health agencies experienced in pediatric oncology and stem cell transplantation.

Acceptance Criteria

Acceptance is based upon patient's specific clinical need and age.

Clinical and Research Information

Division Head, Pediatric Hematology and Stem Cell Transplantation

Morris Kletzel, MD

Multidisciplinary Teams

Children's Memorial uses a comprehensive, family-centered, multi-disciplinary approach to care. The primary care team approach is coordinated by clinicians, surgeons, scientists, nurses, nutritionists, dietitians, advanced practice nurses, and child and family support staff-all of whom are solely dedicated to the care of children. Core components of the multidisciplinary team are certified Child Life specialists, licensed clinical social workers, a trained chaplain, and Friends of the Family volunteer coordinator.

Cooperative Group Membership

· Children's Oncology Group (COG) Chair

· National Wilms' Tumor Study Group (NWTSG)

· Pediatric Brain Tumor Consortium (PBTC)

· Pediatric Blood & Marrow Transplant Consortium (PBMTC)

· Therapeutic Advances in Childhood Leukemia (TACL) Phase I

· Childhood Cancer Survivor Study (CCSS)
· Collaborative Ependymoma Research Network
· Childhood Cancer Research Network
· Clinical Trials Network (CTN)

Cooperative Group Activities

Participation in COG committees include:

· Bone Marrow/Stem Cell Transplant

· Brain Tumor

· Cancer Control

· Clinical Research

· Diagnostic Imaging

· Hepatoblastoma

· Hodgkin's Disease

· Neuroblastoma and Other Embryonic Tumors

· Neuroscience

· Nursing

· Pathology

· Radiation Therapy

· Surgery

· T-Cell Disease

· Wilms' Tumor

· Late Effects

Oncologists are principal investigators on numerous studies.

Average Number of Pediatric Clinical Trials

75

Pediatric Clinical Trial Coordinator

Yolanda Santiago, CCRP
773.880.3443

Research Efforts

The medical center is a hub of oncology/hematology research, leading efforts ranging from molecular genetic studies of certain childhood cancers, to the pioneering use of stem cell transplantation in treating and curing sickle cell disease, to the study of a multi-drug-resistant gene in cancerous brain tumors.

The faculty and nursing staff of Children's Memorial Hospital are involved with several significant research efforts, primarily in the areas of bone marrow/stem cell transplantation, neuro-oncology, and neuroblastoma biology. Faculty are actively involved in biologic research on neuroblastoma, as well as some early investigation into antiangiogenesis. Research is also being pursued relative to cell differentiation in the laboratory. In addition, the stem cell laboratory continues to make major advances in support of the clinical program in the areas related to stem cell procurement, transplantation, and engraftment. These include assessment of engraftment via molecular immuno-genetics, minimal residual disease testing for malignancies including leukemias and neuroblastoma, and the molecular HLA Typing Laboratory.

Children's Memorial Research Center (CMRC) is an integral component of the Children's Memorial Medical Center. CMRC has evolved as the Midwest's only institution devoted exclusively to pediatric medical research. The six core programs of CMRC-cancer biology and chemotherapy, immunobiology, human and molecular genetics, neurobiology, developmental systems biology, and statistical sciences and epidemiology-represent an important direction in contemporary biological investigation in medicine.

Special Expertise

Brain Tumors

Children's Memorial Hospital treats more than 85 percent of the patients with pediatric brain tumors in the Chicagoland region. A large proportion of brain tumor patients are enrolled on clinical trials, include Phase I trials. In addition to brain tumors, Children's experts treat tumors of the spinal cord and the spine itself.

Members of the Division of Pediatric Neurosurgery are involved in basic research in cooperation with the Neurobiology and the Brain Tumor Research Program at Children's Memorial Research Center (CMRC).

The Brain Tumor Clinic provides a comprehensive, multi-disciplinary visit in which experts in pediatric neurosurgery, pediatric oncology, pediatric neurology, pediatric radiation oncology, and social services can examine youngsters. Representatives from physical therapy, audiology, and other pediatric subspecialties are also available to see patients in this clinic. Each patient's neuroradiographic studies are available for review on-site at this weekly clinic, making it easy for family members to ask all the questions they need to in order to fully understand their child's illness and make educated decisions regarding his or her care.

Children's Memorial uses a multidisciplinary approach that gives equal importance to tumor surveillance and neurological, neuroendocrine, and neuropsychiatric issues. Through this teamwork, Children's Memorial continues to make progress towards innovative therapies that maximize survival while minimizing the sequelae faced by these patients and their families.

Currently, Children's Brain Tumor Center treats well over 150 new patients per year.

Leukemia

Children with leukemia comprise the largest single subgroup of patients with oncology diagnoses at Children's Memorial Hospital . Currently, the overall prognosis for children with leukemia is quite good with certain subgroups having outstanding survival while others are still suboptimal. Our faculty hold a special interest and expertise in the treatment of relapse leukemia. The majority of patients are treated on cooperative group protocols that are currently directed at both maximizing cure rates and minimizing toxicities.

For children with lymphocytic leukemia, a significant portion of the treatment can be administered in the clinic so children spend less time on the inpatient unit. For children with non-lymphocytic leukemia and certain high-risk subtypes of lymphocytic leukemia, the majority of the treatment occurs on the inpatient service. The efforts at Children's Memorial Hospital are not only to refine treatment but to try to maintain, as much as possible, the normalcy of daily and family life.

A multidisciplinary approach to the wellbeing of the child, including psychosocial issues, long-term follow-up, and acute treatment issues, comprises the core of the efforts in this area.

Long-Term Follow-Up Clinic

Approximately 75 percent of children diagnosed with cancer become long-term survivors, and more than 1,300 children, adolescents, and young adults are treated through the STAR (Survivors Taking Action & Responsibility) Program at the Children's Memorial Hospital Long-Term Follow-Up Clinic.

The program follows patients beginning five years after diagnosis and extends until the patient is 21 years of age. At this time, survivors are transitioned to our adult health care partners at Northwestern Memorial Hospital for follow-up in their long-term follow-up program. A typical STAR visit focuses on the physiologic and psychological issues facing childhood cancer survivors, including evaluation of growth and development, blood work, physical exams, and cardiac and nutritional assessment. Interest is also given to the psychosocial and academic status of the patients, and new screening tools are being used to elicit information in these areas. Education is provided to patients and their families about their medical history; healthy living habits are promoted; and health maintenance is taught.

Liver Tumors

The distribution of childhood liver tumors diagnosed and treated at Children's Memorial Hospital include a wide variety of lesions. The most commonly encountered tumor is hepatoblastoma, and two thirds of these present with advanced disease (Stage III or IV). The majority of these children are placed on multi-agent treatment protocols of the Children's Oncology Group. The introduction of the liver transplant program at Children's in 1997 has provided a new dimension of treatment for these patients. Our hepatobiliary transplant surgeons have the ability now to resect many lesions previously considered "unresectable," and if resection remains unobtainable, liver transplantation is sometimes an option for therapy.

Lymphoma

The majority of patients are treated on cooperative group protocols. Current prognoses for nearly every subgroup of patients with lymphoma, including those with advanced disease, are quite good. Children's Memorial Hospital strives to improve the cure rates for certain high-risk groups by increasing and refining treatment intensity. Treatment is administered in both inpatient and outpatient settings. The multi-disciplinary faculty at Children's Memorial Hospital has a long-standing and significant interest in all aspects of lymphoma, including lymphomas that have a more unusual presentation or course and those lymphomas associated with the HIV infection.

Neuroblastoma

Innovative, research-based treatment protocols have been developed at Children's for patients with neuroblastoma. High-dose chemotherapy with autologous tandem stem cell rescue is performed on an outpatient basis. With this procedure, Children's has become the region's leading provider of care to children with neuroblastoma.

Children's Memorial Hospital has very active research efforts directed at both laboratory aspects of the biology of this disease and at clinical treatment. Many children with neuroblastoma are treated on cooperative group protocols. The current thrust of these protocols is to minimize therapy in early stage disease while attempting to increase the cure rate for patients with more advanced disease. Currently there is an open in-house study for the treatment of patients with advanced neuroblastoma that includes a multidisciplinary approach combining surgery, chemotherapy, radiation therapy, and biologic agents. The care of this subgroup of children is carefully coordinated between the oncologist, radiation therapist, surgeon, and the bone marrow/stem cell transplant team.

In addition, extensive laboratory research is directed at investigating biologic aspects of neuroblastoma.

Radiation Oncology

Children's Memorial Hospital patients receive their radiation oncology services at Northwestern Memorial Hospital. There are two radiation oncologists with a specialty in pediatric care. Our radiation oncology program employs state-of-the-art technology to maximize cure and minimize complications in the growing child. The technology currently includes fractionated stereotactic radiation, radiosurgery, 3-dimensional conformal treatment planning, total body irradiation, hyperthermia, and both low- and high-dose brachytherapy. Fractionated stereotactic radiotherapy allows delivery of the maximal doses required while sparing as much normal developing brain as possible. This capability has been pioneered at Children's Memorial and is one of the primary advances in pediatric radiation oncology.

Retinoblastoma

Children's Memorial Hospital is a leader in innovative multimodality therapies. The treatment of both sporadic and inheritable forms of retinoblastoma revolves around saving sight and minimizing long-term sequelae of past therapies, including secondary cancer. Presently, Children's Memorial Hospital employs a chemotherapy and local ophthalmologic control (cryotherapy, photocoagulation, etc.) in an attempt to preserve sight and avoid enucleation.

Soft Tissue Sarcomas

Children's approach to these patients is multidisciplinary, including surgery, radiation therapy, and chemotherapy. The treatment is adapted to the tumor type and stage of diagnosis, and each patient is carefully followed for response to therapy and appropriate timing of the various modalities of treatment. The majority of patients are initially treated on national intergroup protocols devised by multiple institutions across the country. Patients who do well are carefully followed in the Long-Term Follow-Up clinic for the management of late complications of their treatment.

A pediatric brachytherapy program has been established to obtain local control without amputation or other mutilating surgery in the treatment of pediatric sarcomas.

Stem Cell Transplantation

The program is a member of the Northwestern University Affiliated Transplant Center (NUATC), The Robert H. Lurie Comprehensive Cancer Center at Northwestern University, The Children's Oncology Group (COG), and the Pediatric Blood and Marrow Transplant Consortium (PBMTC). Each of these entities sponsors clinical trials in pediatric transplantation and correlates with activities in the laboratory.

Children's Memorial Stem Cell Transplant Program achieved initial accreditation from the Foundation for Accreditation of Cellular Therapy (FACT) in 1999. This program was the seventh institution nationwide and the first freestanding pediatric institution to achieve this milestone.

An important feature of the program is a laboratory facility at the cutting edge of processing stem cells, graft engineering, detecting tumor cell contamination of the graft, HLA typing, stem cell expansion, and detection of engraftment by molecular techniques. The program also has its own state-of-the-art HLA laboratory capable of the highest detection of alleles via molecular sequencing. Lab research is primarily in the areas of stem cell processing, stem cell expansion, detection of minimal residual disease, and characterization of mesenchymal cells.

The Ambulatory Stem Cell Unit (ASCU), consisting of four HEPA-filtered, positive-pressure rooms with state-of-the-art monitoring equipment, is devoted exclusively to stem cell transplant patients and their families. This allows Children's to conduct more innovative procedures and provides greater convenience and comfort to patients and families. The rooms are also equipped to provide patients and families the ability to connect to work and school via the Internet.

The Stem Cell Transplant Program was started in 1992. In 1996, Children's Memorial Hospital became an approved National Marrow Donor Program and performs matched, unrelated, and umbilical cord blood stem cell transplants, as well as autologous transplants.

 

Statistics

Children's Memorial Hospital is a leader in the treatment of children in the Chicago area diagnosed with leukemia, solid tumors, and blood diseases.

As of August 31, 2009, a total of 896 stem cell transplants had been performed:

Transplant Type

Number Performed

Percent of No. Performed

Autologous

390

43.5%

PBSC

356

39.7%

BM

30

3.3%

BM+PBSC

22

0.2%

Cord

2

0.2%

Allogeneic

506

56.5%

PBSC

198

22.1%

BM

159

17.7%

Cord Blood

149

16.6%


Percent of children treated in each age range

Age Range

0-1

2-5

6-12

13+

Percent Treated

15.2%*

33.5*

27.1%*

24.2%*

* Age Range Data available only on cases through August 2009.

 

Pediatric Oncology Program Fiscal Year 2009 (Hematology/Oncology Only)

No. of Inpatient Beds

No. of Oncologists

No. of Admissions

Average Length of Stay (Days)

Total Outpatient Visits

No. of Stem Cell Transplants

22

22

1214

5.33

17,527+

48