The five-year survival rate for childhood cancer has increased dramatically over the past four decades. It’s now higher than 80%. While this is fantastic news, long-term survivors must be checked for adverse side affects, known as “late effects.” Late effects may not be noticed until years after cancer treatment. About two-thirds of childhood cancer survivors have at least one late effect and about one-third have a late effect that is severe or life threatening.

Late effects can create challenges for various aspects of growth, development and organ functions, such as:

• Bone health
• Dental health
• Emotional health
• Fertility
• Heart health
• Kidney health
• Learning
• Liver health
• Lung health
• Thyroid health
• Vision and hearing

Our Childhood Cancer Survivorship Program is led by our director, Smita Dandekar, MD, who teaches cancer survivors about the possible late effects and monitors them closely for these effects.

When a patient starts the program, he or she receives an up-to-date personalized treatment summary that includes all chemotherapy, radiation, surgeries or other cancer treatments received.

We then give each patient a custom "Survivorship Roadmap" detailing their risk for late effects, and how and when they should be checked for these effects. Survivors and their families also meet with our survivorship social worker at each visit to talk about things like:

• School
• Work
• Behavioral, emotional and/or relationship concerns
• Financial concerns
• Health insurance questions
• Survivorship education resources

To be eligible for our Childhood Cancer Survivorship Program, a person must have:

• Been diagnosed with childhood cancer at least five years earlier
• Completed therapy at least two years before starting the program

Survivors visit our Survivorship Clinic yearly until age 18 or 10 years after therapy, whichever is later. Then the survivor becomes an alumnus of the Survivorship Program and transitions care to his or her family doctor.

Learn more about our Childhood Cancer Survivorship Program

Our Pediatric Experimental Therapeutics Program began in 2010. Its mission is to offer new, experimental treatments that incorporate leading-edge science to children with all types of cancer, including solid tumors, leukemias and lymphomas. 

We’re able to offer a variety of clinical trials to our patients through our memberships in the Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC), the Pediatric Oncology Experimental Therapeutics Investigators’ Consortium (POETIC), the Pediatric Blood and Marrow Transplant Consortium (PBMTC) and the Children’s Oncology Group (COG).

The Pediatric Experiment Therapeutics Program is lead by our Experimental Therapeutics Research and Clinical Team (ExTRaCT):

• Valerie I. Brown, MD, PhD, Director
• Lisa McGregor, MD, PhD, Children's Oncology Group (COG) PI
• Robert Greiner, MD, SCT liaison
• Smita Dandekar, MD, Survivorship and Leukemia liaison
• Suzanne Treadway, MS, RN, CCRP, Clinical Research Nurse and Coordinator
• Kathryn Byrnes, BS, CCRP, Compliance Specialist
• Katie Sneeringer, BS, Database Manager

The goal of the Pediatric Cancer Genetics Program is to provide individuals with information and guidelines based on their family history and/or genetic test results that will help in the prevention and early detection of cancer.

Genetics and Cancer Risk

Researchers estimate that about 8.5 to 10 percent of childhood cancers are due to hereditary factors.

Genetic Testing

Genetic testing may identify a hereditary cancer syndrome in a child, and could:

• Answer why a child developed cancer
• Guide screening for other cancers
• Guide treatment strategies
• Identify other family members at risk for cancer/other medical conditions

How Can Genetic Counseling Help Families?

A Genetic Counselor

Wants to listen and understand what patients and families are going through - to help them make decisions. The genetic counselor may:

• Conduct a genetic risk assessment
• Discuss genetic testing
• Determine how patients and families perceive cancer risk
• Discuss emotional well-being
• Ask about family dynamics  and support system
• Provide helpful resources
• Discuss future health concerns

Our program is led a genetic counselor who specializes in the discovery and explanation of a child’s personal and/or family history as it relates to their diagnosis of cancer.

The genetic risk assessment conducted by the genetic counselor may determine whether the child has a personal or family history associated with a hereditary cancer syndrome.

Genetic counseling can help parents and families make informed decisions regarding testing, treatments and future plans.

Possible Reasons for Referral

• Acute Myeloid Leukemia
• Adrenocortical carcinoma
• Atypical teratoid or rhabdoid tumor
• Basal cell carcinoma
• Cardiac rhabdomyoma
• Colon polyps or adenocarcinoma
• Choroid plexus carcinoma
• Desmoid tumor
• Endolymphatic sac tumors
• Family history of cancer diagnosed at a young age
• Hemangioblastoma
• Hepatoblastoma
• Medulloblastoma
• Malignant nerve sheath tumors
• Neuroblastoma
• Ovarian sertoli-leydig cell tumors
• Optic pathway glioma
• Osteosarcoma
• Pineoblastoma
• Pituitary blastoma
• Pheochromocytoma/paraganglioma
• Pleuropulmonary blastoma
• Rhabdomyosarcoma
• Retinoblastoma
• Schwannoma
• Thyroid carcinoma
• Wilms tumor

Our Pediatric Hemophilia Program is an important part of Pennsylvania State University's federal and state funded Comprehensive Hemophilia Treatment Center. This program provides multidisciplinary and comprehensive care for children with inherited (passed down from family members) bleeding disorders.

Services include:

• Diagnosis and management of hemophilia and its complications
• Home infusion program
• Physical therapy
• Family counseling and support

Our Pediatric Hemostasis and Thrombosis Program cares for patients with thrombotic and bleeding disorders other than hemophilia. This program focuses on patients with:

• Thrombosis (vein and clotting problems)
• Inherited hypercoagulable states (too much blood clotting)
• Platelet function disorders

We also help patients on anti-coagulation medication (blood thinners) who need ongoing care.

Our Pediatric Neuro-Oncology Program started more than 15 years ago to improve care and treatment for children with brain and spinal cord tumors.  

This program aims to improve the survival rate for children with these conditions through advanced, research-based care. Our doctors have a high level of expertise and include a variety of subspecialists, including:

• Pediatric oncology
• Pediatric neurosurgery
• Radiation oncology
• Pediatric neuroradiology
• Neuropathology

We also work with experts in psychology, social work, nursing, physical therapy, occupational therapy, audiology and rehabilitation services when necessary.

Our experts work together to provide highly specialized treatment plans. We are part of the Children’s Oncology Group (COG), an international childhood cancer research organization. This allows us to offer children access to the newest drug trials available. We also offer clinical trials through our membership in the Pediatric Oncology Experimental Therapeutics Investigators’ Consortium (POETIC) and Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC).

View our open clinical trials available at Penn State Health Children’s Hospital.

Our Pediatric Oncology team cares for children of all ages with a variety of cancers. We understand that patients and their families need emotional, spiritual and medical support throughout cancer treatment.

Each care team includes the patient, their family, a physician, nurse specialist and social worker. Child life specialists, music therapists, and psychological and educational specialists are available as needed.

We treat all pediatric cancers, including:

• Leukemias
  • Acute lymphoblastic leukemia (ALL)
  • Acute myelocytic leukemia (AML)
  • Chronic myelocytic leukemia (CML)
  • Juvenile chronic myelogenous leukemia (JCML)
  • Juvenile myelomonocytic leukemia (JMML)
• Brain tumors
  • Medulloblastoma
  • Primitive neuroectodermal tumor (PNET)
  • Ependymoma
  • Astrocytoma (high grade, cerebellar, low grade)
  • Glioblastoma
  • Brainstem gliomas
  • Central nervous system (CNS) germ cell tumors
• Solid tumors
  • Non-Hodgkin’s lymphoma
  • Hodgkin’s disease
  • Neuroblastoma
  • Wilms’ tumor
  • Rhabdomyosarcoma
  • Bone tumors
  • Ewing’s sarcoma
  • Osteosarcoma
  • Hepatoblastoma
  • Germ cell tumors
  • Retinoblastoma

Leading-edge therapies for children with relapsed and refractory tumors

We offer a wide variety of innovative therapies to children with relapsed and refractory cancer. Many of these include novel, leading-edge approaches that not only attack the tumors, but also use the immune system to fight cancers.

Our team is here to walk you and your child through the process of participating in a clinical trial and to coordinate your visits to the Medical Center for treatment. We are always available to answer your questions.

Our Pediatric Comprehensive Sickle Cell Anemia Program helps diagnose, treat and manage all types of sickle cell disease in children. We currently care for more than 150 affected children and their families through preventive care, therapy for sudden (acute) and ongoing (chronic) complications. We also teach them about managing sickle cell disease.

This program is lead by:

• Gayle Smink, MD, Co-director
• Pritish Mondal, MD, Assistant Professor of Pediatrics, Division of Pediatric Pulmonology
• Amanda L. Musser, MSW, LCSW, OSW-C, CATP, Pediatric Hematology/Oncology Social Worker
• Jodi Reinard, BSN, RN, CPN, Pediatric Hematology/Oncology Clinical Nurse Coordinator

Our Pediatric Stem Cell Transplantation Program serves children with disorders that require a stem cell transplant as treatment. This program began more than 20 years ago so patients and their families could get needed care close to home.

Our pediatric transplant doctors have many years of experience caring for stem cell transplant patients. A transplant doctor is available 24 hours a day, seven days a week to address any transplant-related questions.  

We are accredited by the Foundation for the Accreditation of Hematopoietic Cell Therapy (FACT), and are members of the Pediatric Blood and Marrow Transplant Consortium and the Children's Oncology Group. 

Many major insurance companies consider our Pediatric Stem Cell Transplantation Program a stem cell transplant center of excellence.

Types of stem cell transplants we offer include:

• Allogeneic transplants. This type transfers stem cells from one person to another. It is used to treat:
  • Acute lymphoblastic leukemia (ALL)
  • Acute myelogenous leukemia (AML)
  • Chronic myelogenous leukemia (CML)
  • Myelodysplastic syndrome (MDS)
  • Juvenile myelomonocytic leukemia (JMML)
  • Lymphoma
  • Aplastic anemia
  • Immunodeficiency disorders
  • Metabolic disorders
  • Bone marrow failure disorders
  • Hemoglobin disorders, such as sickle cell anemia and Beta-thalassemia
• Autologous transplants. Autologous means “self.” This type of transplant transfers stem cells from a person back to themselves. It is usually used for patients with solid tumors including:
  • Neuroblastoma
  • Brain tumors

Adolescent and young adult (AYA) refers to someone diagnosed with cancer between the ages of 15 and 39. It’s an age range of cancer patients with unique needs, which have been overlooked by many, even professionals, in the oncology community.

Juggling cancer care with school, work, launching one’s independence, new relationships and young families are some of the hallmarks of this age group.

We’re invested in changing cancer care for the Penn State Health AYA community.