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Patients and Families
New to NIH: Frequently Asked Questions

Image of two young ladies holding up photos of themselves during Chemotherapy Traveling to a new hospital can be stressful. We hope the information provided here will answer your questions before your first visit to the Pediatric Oncology Branch, located within the NIH Clinical Center. You can find answers to the following frequently asked questions below:

Is treatment at the NIH Clinical Center the right choice for our family?
What diseases are treated at the Pediatric Oncology Branch?
What types of treatment are offered?
The NIH is a clinical research center. Will the therapy be experimental?
Who is eligible to be treated at the Pediatric Oncology Branch?
What does the treatment cost?
Important Telephone Numbers

How do we prepare for a trip to the NIH Clinical Center?
Where is patient care provided?
Inpatient Care at the NIH Clinical Center
Where do we stay when receiving care as an outpatient?
Other Places to Stay
What to Bring

What can we expect during our stay?
What happens when we first arrive?
Registration
Meals
Cafeteria in Building 10
Registered Dietician

What diseases are treated at the Pediatric Oncology Branch?
The Pediatric Oncology Branch at the Clinical Center at NIH treats a wide variety of pediatric malignancies including acute leukemia, lymphoma, solid tumors including sarcomas (Ewing’s sarcoma, osteosarcoma, rhabdomyosarcoma and desmoplastic small round cell tumor), neuroblastoma, melanoma and brain tumors and gastrointestinal stromal cell tumors (GIST).  Children with newly diagnosed as well as recurrent malignancies are treated. In addition, the Pediatric Oncology Branch has a clinical trials program for children and young adults with graft-versus host disease, and tumors related to genetic diseases predisposing to tumors, such as NF1 and NF2 related tumors or medullary thyroid carcinoma.

What types of treatment are offered?
There are over two-dozen active treatment protocols. Clinical protocols for newly diagnosed patients emphasize "state of the art" treatment. In addition, treatment approaches for relapsed patients include Phase I and II studies, which utilize new chemotherapeutic agents, molecularly targeted therapy, antibodies, immunotherapy and bone marrow transplantation.

The NIH is a clinical research center. Will the therapy be experimental?
A common misperception is that since the NIH is a clinical research center all treatment administered to patients is "experimental." It is important to know that new agents are not offered to a patient for whom there is a known effective therapy. The major advantage to patients treated at the National Cancer Institute is that they are receiving the most up-to-date treatment for their cancer. The testing of new drugs is reserved solely for those patients whose disease is refractory to standard treatment, or who have a disease for which no standard medical treatment exists. Participation in a trial at the NIH is entirely voluntary. All new agents are screened and tested extensively before the Food and Drug Administration grants approval for use in clinical trials.

Who is eligible to be treated at the Pediatric Oncology Branch?
Children, teenagers and young adults with newly diagnosed or recurrent malignancies, or certain genetic tumor predisposition syndromes are potential candidates for referral to the Pediatric Oncology Branch.

What does the treatment cost?
There is no charge to patients for services rendered at the Clinical Center as part of their participation in clinical protocols. NIH does not cover expenses for services delivered at other facilities.

Important Telephone Numbers
To refer a patient your physician should contact the Pediatric Oncology Branch by calling locally 301-496-4256, or the toll-free number, 1-877-624-4878 (8:30 am to 5:00 pm, Monday-Friday). Parents can also call these numbers if they are interested in determining if their child is eligible for a particular protocol.

Where is patient care provided?
Most children and adolescents that come to the Pediatric Oncology Branch to participate in a clinical trial are treated as outpatients. This means that as an outpatient, they do not spend the night at the hospital. They only have to be at the hospital for medical care, treatments, and check-ups.

The terms “clinic” and “day hospital” refer to the areas on the first floor of the hospital where care will be provided. Most of your child’s visits to NCI will be for outpatient care in one of these areas.

Inpatient Care at the NIH Clinical Center
If the doctor decides your child needs to stay in the hospital, your child will probably be admitted to an inpatient unit on the 1st floor called 1NW. 1NW has 22 inpatient beds.

Every inpatient room has a bed for parents to stay in, a bathroom, a window and a television capable of internet access.

Where do we stay when receiving care as an outpatient?
The Children’s Inn at the National Institutes of Health is a residential “place like home” for sick children and their families. Children come from across the country and around the world to stay together with their families in The Inn’s healing environment, while receiving groundbreaking medical treatments at the NIH. The NIH takes care of the child’s medical needs and The Inn tends to the child’s heart, soul and spirit. A social worker will help make arrangements for your first stay at the Inn. Parents make their own reservations for all future visits.
For more information please visit: http://www.childrensinn.org

Other Places to Stay
If the Children’s Inn is booked or the patient cannot stay at the Inn due to medical reasons, a social worker will assist you with finding other locations to stay for the interim of your visit. Several hotels in the area accommodate our families and shuttles run each day to and from NIH.

What to Bring
Here is a list of essential items to bring:

  • A government-issued photo identification card (ID) for parent(s) (driver’s license, passport or other official ID)
  • Custody, divorce, adoption, or foster care papers, when needed to verify who can sign for your child’s medical tests and treatments.
  • Insurance information, including insurance card(s)
  • Social Security numbers of patient and parent(s) or guardian(s)
  • Emergency contact(s) name, address and phone numbers
  • Family doctor's name, address, phone, fax and e-mail address
  • Name of doctor to receive medical information (address, phone, fax and e-mail)
  • Clothing for you and your child. Visit the National Weather Service Web site to
    check the Washington DC/Maryland weather forecast. To check NIH weather please refer to this link: http://nihlibrary.nih.gov/AboutUs/Pages/Current%20Weather.aspx
  • A small number of comfort items for your child: Blanket or toys, photos of
    family, friends and pets to help your child cope with home sickness.
  • Prescription medications for the patient.
  • Extra supplies of prescription medications for anyone accompanying the
    patient as an extended stay may be necessary.

What happens when we first arrive?
We suggest that you arrive at NIH the day before your first scheduled appointment at the Clinical Center hospital. If you do arrive at NIH on the day before your scheduled appointment, you may go directly to The Children’s Inn and check-in. They will schedule an orientation/tour and the rest of the evening is for you to enjoy. The next morning you will come to the Clinical Center hospital at the appointed time given to you. The Children’s Inn is a very short walk from the hospital or a van is also available to bring you back and forth if you prefer.

Registration
Your first stop upon arrival at the hospital is the Admissions Desk. As you walk into the lobby, staff at the Information Desk will point out where Admissions is located. Remember to bring custody, adoption or foster care papers with you to show that you are legally able to sign consents for your child’s care if you share custody or are not the biological parent.

Meals
The Children’s Inn at NIH offers fully stocked kitchens. Grocery runs to local stores occur several times a week. In addition, a pantry that is usually filled with soups, cereals, and macaroni and cheese boxes is available.

When you are at the hospital, breakfast and lunch bags are available for patients in the clinic. Please speak with your nurse when you arrive, if this is something that you would like for your child. Three meals a day are available for patients being treated in either the day hospital or the inpatient unit.

Cafeteria in Building 10
One of the cafeterias in Building 10 is located on the B1 Level and its hours of operation for breakfast are from 6:30 to 9:30 am and lunch is served from 11:00 to 2:30 pm. This cafeteria offers selections from such restaurants as Sbarros, Coyote Jack’s Grill, Au Bon Pain as well as sandwiches and a salad bar. A second cafeteria is located in the North Corridor of the second floor with the same lunch hours offering sandwiches, hamburgers, salads, etc. Au Bon Pain is located in the north entrance of Building 10 offering sandwiches, coffee, sodas, pastries, etc.

Registered Dietitians
Registered dietitians specializing in the care of children with cancer and other illnesses are here to offer you advice and ideas about your child’s nutritional needs. They can also help you with food-related problems. Your primary doctor can make a referral for you to meet with a dietician.

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This Page Last Reviewed on February 26, 2013

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