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Our Guide for Your
Hospital Stay

Life-Lines: Resources for Survivors

Quicklinks

Print Media / Book Resources
Long-Term Follow-Up Programs
Service Organizations
Organizations offering Information
Online Resources

Print Media/Books

Fromer, Margot Joan: Surviving Childhood Cancer: A Guide for Families. Washington, DC: American Psychiatric Press, 1995.
Halvoson-Boyd, Glenna and Lisa Hunter: Dancing in Limbo: Making Sense of Life after Cancer. San Francisco: Jossey-Bass, 1995.
Harpham, Wendy Schlessel: After Cancer: A Guide to Your New Life. New York: W.W. Norton & Co., 1994.
Hoffman, Barbara (ed.): A Cancer Survivor's Almanac: Charting Your Journey. Minneapolis: Chronimed Publishing, 1996.
Janes-Hodder, Honna and Keene, Nancy. Childhood Cancer: A Parent's Guide to Solid Tumor Cancers. Sebastopol: O'Reilly & Associates, 1999.
Keene, Nancy, Hobbie, Wendy, and Ruccione, Kathy. Childhood Cancer Survivors: A Practical Guide to your Future. Sebastopol:O'Reilly & Associates, 2000. (Includes Personal Long-Term Follow-Up Guide and Treatment Record) www.patientcenters.com.
Keene, Nancy. Childhood Leukemia- A Guide for Families, Friends, and Caregivers. Sebastopol:O'Reilly & Associates, 1999.
Koocher, Gerald P and O'Malley, John E.: The Damocles Syndrome: Psychosocial Consequences of Surviving Childhood Cancer. New York: McGraw-Hill, 1981. (out of print, but may be available through a library)
Meadows, Anna T. and Fenton, Judith Gallager. Taking Charge of Your Health: A Guide to Medical Follow-up for Young Adults Who Had Cancer in Childhood.
Children's Hospital of Philadelphia, 1995.National Cancer Institute. Cancer Survivorship: An Annotated Bibliography. National Institute of Health (NIH), Publication No. 91-3173, 1990.
National Cancer Institute. Facing Forward: A Guide for Cancer Survivors.
National Institute of Health (NIH), Publication No. 90-2424, 1990.
National Coalition for Cancer Survivorship. Teamwork: The Cancer Patient's Guide to Talking with Your Doctor. National Coalition for Cancer Survivorship(NCCS), 1991.
Nessim, Susan and Judith Ellis. Cancervive: The Challenge of Life after Cancer. Boston: Houghton Mifflin Co., 1991.

Long-Term Follow-Up Programs at Major Medical Centers

California

Childrens Hospital Los Angeles
LIFE Program
Childrens Center for Cancer and Blood Diseases
4650 Sunset Blvd. Mailstop #54
Los Angeles, CA 90027
Information: (323) 660-4188
nurse practitioners -
Mary Nelson, MS, CPNP, CPON [Email]
and Kimberly Ward, RN, FNP [Email]
physician - David Tishler, M.D. [Email]
appointments: (323) 660-2450 ext. 6377
(sees adults, provides referral for adults)

Children's Hospital of Orange County
Late Effects Clinic
455 Main Street, Orange, CA 92868
(714) 289-4181
contact - Melanie Maciasz, RN, BSN
physician - Pamela Kempert, M.D.

City of Hope National Medical Center
Long Term Follow-up Clinic for Survivors of Childhood Cancer
1500 E. Duarte Rd., Duarte, CA 91010
(626) 359-5811 ext. 4527
nurse practitioner - Wendy Landier,
MSN, CPNP, CPON [Email]
physician - Smita Bhatia, M.D.

Lucile Packard Children's Hospital at Stanford
Long Term Follow Up Clinic
725 Welch Rd., Palo Alto CA 94304
(650) 497-8953
Tina Baggott - coordinator
Physician - Neyssa Marina, M.D.
(provides referrals for adults)

Florida

The Arnold Palmer Hospital for
Women and Children
FACT Clinic
83 W. Columbia St., Orlando, FL 32806
(407) 650-7230
Coordinator - Rebecca Martin
Rotating doctors

Joe DiMaggio Children's Hospital
Division of Pediatric Hematology-
Oncology
1150 N. 35th Ave, Suite 350
Hollywood, FL 33021
(954) 986-6389

Miami Children's Hospital
Late-Effects Clinic
3100 South West 62nd Ave.
Miami, FL 33155
(800) 432-6837

Nemours Children's Clinic
Hem/Oncology Clinic
807 Nira Street, Jacksonville, FL 32207
(904) 390-3789
Joan Lawlor-coordinator
Rotating doctors

Georgia

Children's Healthcare of Atlanta
Children's Cancer Survivor Clinic
1405 Clifton Road
Atlanta, GA 30322
Nurse practitioner - Kathy Forte, MSN,
CPNP, CPON
Phone (404) 315-2254
Physician - Lillian Meecham, M.D.
Phone (404) 727-8232

Illinois

Children's Memorial Hospital
2300 Children's Plaza
Chicago, IL 60614
Nurse practitioner - Karen Kinahan
MS, RN
(773) 880-4151
Physician - Elaine Morgan, M.D.
(treats adult survivors)

Indiana

Riley Children's Hospital
702 Barnhill Drive
Indianapolis, IN 46202
(800) 238-8399
coordinator - Jennifer Harley
rotating doctors
(sees adults, will refer)

Maryland

Johns Hopkins Oncology Center
Long-Term Follow-up Clinic
600 N. Wolfe St. Park 2 Clinic
Baltimore, MD 21287
(410) 955-2457
coordinator - Kathy Ruble, RN
physician - Cindy Schwartz, M.D.

Massachusetts

Dana Farber Cancer Institute
David B. Perini, Jr. Quality of Life
Clinic for Childhood Cancer Survivors
44 Binney St.
Boston, MA 02115
(617) 632-5124
contact - Ellen E. Casey
physician - Lisa Diller, M.D.

Michigan

University of Michigan
1500 East Medical Center Dr.
Ann Arbor, MI 48109
Coordinator - Marcia Leonard
Physician - Val Castle, M.D.

Minnesota

Fairview - University Children's
Hospital
Long-term Follow-up Clinic
Harvard St. and East River Rd.
Minneapolis, MN 55455
(612) 625-5411
coordinator - Nancy Youngren
physician - Joseph Neglia, M.D.

New Jersey

University Medical Center
Tomorrow's Children's Institution
Care and Beyond
385 Prospect Ave.
Hackensack, NJ 07607
(201) 968-9311
coordinator - Hope Castoria, RN
physician - Beverly Ryan, M.D.

New York

Children's Hospital at Strong
Long-term Survivor's Clinic
University of Rochester Medical Center
601 Elmwood Ave.
Rochester, NY 14642
(716) 275-2981
Contact - Cindy Proukou
Physician - Andrea Hinkle, M.D.
(follows adults)

Post-Treatment Resource Program
410 East 62nd Street
New York, NY 10021
(212) 639-8138
physician - Charles Sklar, M.D.

Roswell Park Cancer Center
Long-term Follow-up Project
Elm & Carlton, Buffalo, NY 14263
Coordinator - Brenda Hall
Physician - Daniel Green, M.D.

Upstate Medical University
Kids Now Off Therapy
750 E. Adams St., Syracuse, NY 13210
(315) 464-7229
coordinator - Sue Shaw
physician - Irene Cherrick, M.D.

North Carolina

Duke University Medical Center
Durham, NC 27710
(919) 684-3401
Philip Rosoff, M.D. (children & teens)
Carlos DeCastro, M.D. (adults)

University of North Carolina
Long-term Follow-up Clinic
Chapel Hill, NC 27599
(919) 966-1609
coordinator - Gwen Konsler RN, BSN,
physician - Stuart H. Gold, M.D.

Ohio

Cincinnati Children's Hospital Medical Center
Great American ATP Five-Plus Clinic
3333 Burnet Ave.
Cincinnati, OH 45229
(513) 636-4266
coordinator - Judy Correll
physician - Cynthia DeLaat, M.D.
(sees adults, will refer)

Pennsylvania

Children's Hospital of Philadelphia
Transition Clinic
34th Street and Civic Center Blvd.
Philadelphia, PA 19104
(215) 590-3025
Coordinator - Wendy Hobbie, MSN, CPNP, CPON
(sees adults)

South Carolina

Medical University of South Carolina Children's Hospital
FACT - Follow-up After Cancer Treatment
165 Ashley Ave., PO Box 250911
Charleston, SC 29425
(843) 792-2957
coordinator - Diane Dufour
nurse - Sonja Muckensuss, RN
physician - Julio Barredo, M.D.

Tennessee

St. Jude Children's Research Hospital
After Completion of Therapy (ACT) Clinic
501 St. Jude Place
Memphis, TN 38105
(901) 495-3657

Texas

Children's Medical Center of Dallas
After the Cancer Experience (ACE) Program
1935 Motor Street, Dallas, TX 75235
(214) 456-2948
coordinator - Debra Eshelman, CPNP
physician - Julie Katz, M.D. (children and teens)
Kevin Oeffinger, M.D. (adults)

MD Anderson Cancer Center
Long-Term Survivor Clinic
1515 Holcombe, Box 87
Houston, TX 77030
(713) 792-2121
coordinator - Hallie Zietz
physicians - Norman Jaffe, M.D.
Steve Culbert, M.D.
(adults treated at the Life After Cancer clinic)

Texas Children's Hospital
Late Effects Clinic
6621 Fannin St.
Houston, TX 77030
(713) 770-4533
coordinator - Sarah Bottomley, CPNP
physician - Jo Ann Dreyer, M.D.

Wisconsin

University of Wisconsin Hospital and Clinics
Caring for Life
600 Highland Ave.
Madison, WI 53792
(608) 262-5726
coordinator - Peggy Possin

Organizations that Provide Information

American Brain Tumor Association
2720 River Road
Des Plaines, IL 60018
(847) 827-9910
www.abta.org

American Cancer Society
National Office
1599 Clifton Road, NE
Atlanta, GA 30329
(800) ACS-2345
www.cancer.org

Cancer Care
275 7th Avenue
New York, NY 10001
(800) 813-HOPE or (212) 302-2400

Cancervive
6500 Wilshire Bl., Suite 500
Los Angeles, CA 90048
(310) 203-9232
www.cancervive.org

Cancer Cured Kids
P.O. Box 189
Old Westbury, NY 11568
(516) 484-8160

Candlelighters Childhood Cancer Foundation
3910 Warner Street
Kensington, MD 20895
(800) 366-CCCF or (301) 962-3520
www.candlelighters.org

Childhood Brain Tumor Foundation
20312 Watkins Meadows Drive
Germantown, MD 20876
(301) 515-2900
www.childhoodbraintumor.org

Leukemia and Lymphoma Society
733 Third Avenue, New York, NY 10017
(212) 573-8484, www.leukemia.org

National Cancer Institute (NCI)
Office of Cancer Communications
Cancer Information Clearinghouse
9000 Rockville Pike
Building 31, Room 10A-18
Bethesda, MD 20205

National Childhood Cancer Foundation (NCCF)
440 E. Huntington Drive
Arcadia, CA 91066-6012
Telephone: (800) 458-NCCF
Fax: (626) 447-6359
www.nccf.org

National Coalition For Cancer Survivorship (NCCS)
1010 Wayne Avenue, Suite 770
Silver Spring, MD 20910-5600
(877) NCCS-YES or (877) 622-7937
www.cansearch.org

Service Organizations

Facial Differences

Let's Face It
P.O. Box 29972
Bellingham, WA 98228
(360) 676-7325

Hair Loss

Locks of Love
1640 S. Congress Avenue, Suite 104
Palm Springs, FL 33416
(888) 896-1588 or
(561) 963-1677

Hip Hat
3733 Shore Bl.
Oldsmar, FL 34677
1-877-HIP-HATS or 1-877-447-4287
Fax: (813) 314-0139

Hepatitis

Hepatitis Foundation International (HFI)
30 Sunrise Terrace
Cedar Grove, NJ 07009-1423
(800) 891-0707
www.hepfi.org

Hepatitis Liver Disease Help Line
75 Maiden Lane, Suite 603
New York, NY 10038
(800) 223-0179

Fertility

National Infertility Network Exchange
P.O. Box 204
East Meadow, NY 11554
(516) 794-5772

RESOLVE
1310 Broadway
Somerville, MA 02144
(617) 623-0744
www.ldanatl.org

Learning Disabilities

Learning Disabilities Association
4156 Library Road
Pittsburgh, PA 15234-1349
(412) 341-1515

Legal Rights

Cancer Legal Resource Center
919 South Albany Street
Los Angeles, CA 90015-0019
(213) 736-1455

Childhood Cancer Ombudsman Program
P.O. Box 595
Burgess, VA 22432
FAX (804) 580-2502 or 2304

National Association of Protection and Advocacy Systems
900 2nd Street NE, Suite 211
Washington, DC 20002
(202) 408-9514

Online Resources

Association of Cancer Online Resources
Oncolink
Cancer Survivors Gathering Place