Patient and Family Education

• Brain and spinal cord tumors
  • Brain Tumor Support Group (PDF)
  • American Brain Tumor Association
  • Childhood Brain and Spinal Cord Tumors: A Guide for Families, Friends and Caregivers by Tania Shiminski-Maher, Patsy Cullen and Maria Sansalone. 
    This guide covers how to understand the diagnosis and treatment, how to cope with side effects and where to find emotional support.

  Contact our Cancer and Blood Disorders Center to learn more about brain and spinal cord tumors.

• Bleeding disorders
  • Hemophilia and Other Bleeding Disorders at School (PDF) (Spanish)
  • Hemophilia Safety Checklist (PDF)
  • ITP in Kids (Platelet Disorder Support Organization)
  • PTI (trombocytopenia immune) (PDF)
  • Bleeding Disorders Foundation of Washington
  • National Hemophilia Foundation
  • Platelet Disorder Support Association

  Contact our Cancer and Blood Disorders Center to learn more about hemophilia, immune thrombocytopenia, Von Willebrand disease and other bleeding disorders. 

• Blood clotting disorders
  • Blood Clots in Children (PDF) (from National Blood Clot Alliance)
  • National Blood Clot Alliance

  Contact our Cancer and Blood Disorders Center to learn more about thrombosis, thrombophilia and other blood clotting disorders. 

• Bone marrow failure
  • Aplastic Anemia and MDS International Foundation 
  • Diamond Blackfan Anemia Registry of North America
  • North American Pediatric Aplastic Anemia Consortium (NAPAAC)
  • Dyskeratosis Congenita Outreach, Inc.
  • GATA2 Deficiency Research Registries (National Institutes of Health)
  • Shwachman-Diamond Syndrome Foundation
  • Shwachman-Diamond Syndrome Registry

  Contact our Cancer and Blood Disorders Center to learn more about aplastic anemia, Diamond-Blackfan anemia, dyskeratosis congenita, GATA2 deficiency, Shwachman-Diamond syndrome and other bone marrow failure conditions.

• Bone tumors
  • Benign Bone Tumors (PDF) (Spanish)
  • Physical and Occupational Therapy after Bone Tumor Orthopedic Surgery (PDF) (Spanish)
• Leukemia
  • Childhood Leukemia: A Guide for Families, Friends and Caregivers by Nancy Keene 
    This complete guide offers practical advice for coping with procedures, hospital stays and social, emotional and financial problems that relate to cancer.
  • Leukemia and Lymphoma Society

  Contact our Cancer and Blood Disorders Center to learn more about leukemia (ALL or AML).

• Thalassemia
  • Cooley's Anemia Foundation Inc.
  • Thalassemia Support Foundation  
  • Thalassemia Patients and Friends
  • Isabella’s Journey

  Contact our Cancer and Blood Disorders Center to learn more about thalassemia. 

• White blood cell disorders
  • Histiocyte Association

• Books

  Many of these books can be checked out from the Family Resource Center at Seattle Children’s or found at your local library or bookstore. Here, we've provided links to Amazon.com.

  • Angry Octopus
  • Because… Someone I Know Has Cancer
  • Chemo, Craziness and Comfort
  • Childhood Cancer: A Parent’s Guide to Solid Tumor Cancers, Second Edition
  • Educating the Child With Cancer: A Guide for Parents and Teachers
  • Hi, My Name Is Jack
  • How Do Dinosaurs Get Well Soon?
  • Me and My Marrow
  • Oliver’s Story: For “Sibs” of Kids with Cancer
  • Taking Cancer to School
  • Upside Down and Backwards
  • What Is Cancer Anyway? Explaining Cancer to Children of All Ages
• Websites
  • Alex’s Lemonade Stand
    Alex’s Lemonade Stand is a national childhood cancer foundation that raises money and awareness for childhood cancers. It exists to encourage and empower people, especially children, to get involved and make a difference for children with cancer.
  • American Cancer Society (ACS)
    The society’s website provides local ACS information, programs and events, as well as specific topic searches.
  • American Childhood Cancer Organization
  • CancerIndex
    This nonprofit site contains an overview of cancer resources on the Internet. It contains information for both parents and physicians, with over 4,000 links.
  • Centro de Investigación del Cáncer Fred Hutchinson (Fred Hutchinson Cancer Research Center)
    Este sitio en el Internet proporciona información en español acerca del cáncer, su tratamiento y prevención.
  • CureSearch
    CureSearch was formed by the Children’s Oncology Group and the National Childhood Cancer Foundation. Through its various arms, the organization participates in research, care, advocacy and fundraising related to childhood cancers. The CureSearch website also contains information on specific types of childhood cancer and treatment.
  • Fred Hutchinson Cancer Center
    This website contains information about cancer, its treatment and prevention.
  • National Cancer Institute (NCI)
    This comprehensive website provides statistics and information on various types of cancer, clinical trials and research.
  • Paul and the Dragon (video)

• Bone Marrow Biopsy and Bone Marrow Aspiration (PDF)
  Also available in Spanish (PDF), Russian (PDF) and Vietnamese (PDF). 
  Explains care after bone marrow biopsy or bone marrow aspiration. Includes how to prevent infection, when test results will be ready, what to do for pain and when to call the clinic.
• Bone Marrow and Stem Cell Transplants: A Guide for Patients by Susan Stewart
  Aimed at adult patients, this is a useful guide for parents and other family members who want to learn about the process.
• Kidney Biopsy (PDF)
• Liver Biopsy (PDF)
• Lumbar Puncture (PDF)
  Also available in Spanish (PDF) and Vietnamese (PDF). 
  Explains care after lumbar puncture (also called a spinal tap). Includes how to prevent infection, what to do about pain, when to call the clinic and how to manage side effects.
• Port-a-Cath (Video. 9:08)
  This video shows you what to expect when you come to the clinic for port access. It shows the steps you can take to get ready and what happens during the appointment.

• Pump Up the Iron (PDF) (Chinese) (Russian) (Somali) (Spanish) (Vietnamese) (Washington State Department of Health)
• Pump Up the Diet with Iron for Teens (HealthyChildren.org)
• Skin Biopsy (PDF) Also available in Spanish (PDF). 
  Discusses skin biopsy procedures and describes what to expect after the procedure.
• Staying strong while you are on the Cancer and Blood Disorders Center - Inpatient (Spanish) (PDF)
• Physical and Occupational Therapy in the Cancer and Blood Disorders Center and Unit (PDF)
• Physical and occupational therapy after bone tumor orthopedic surgery (Spanish) (PDF)

• Chronic GVHD of the Vulva and Vagina (PDF)
• Fertility and Cancer Treatment (Girls) (PDF)
• Freezing Your Eggs (Egg Cryopreservation) (PDF)
• Medical Therapies and Sexuality: My Sex Life (PDF)
• Medical Therapies and Sexuality: Pregnancy (PDF)
• Sperm Banking (PDF)
• Sperm Banking (Spanish) (PDF)

• Websites
  • 13thirty Cancer Connect
    This website offers information for teens about diagnosis, treatment and living with cancer.
  • Look Good Feel Better 
    Look Good Feel Better for Teens is a hospital-based public service program created by the Personal Care Products Council Foundation and its collaborators to help girls and guys between the ages of 13 and 17 deal with the appearance, health and social side effects of cancer treatment.
  • My Onco Fertility
    This website gives resources and education materials about cancer treatment and fertility.
  • Stupidcancer.org
    Stupidcancer.org is an advocacy group that raises awareness about people under age 40 living with cancer. It also offers resources for teens and young adults.
  • Ulman Cancer Fund for Young Adults
    This website includes information about free support programs, education and resources for young adults, their families and friends who are affected by cancer.
• Books
  • Childhood Cancer Survivors: A Practical Guide to Your Future
  • Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s
  • Life After Cancer in Adolescence and Young Adulthood: The Experience of Survivorship
  • Planet Cancer: The Frequently Bizarre Yet Always Informative Experiences and Thoughts of Your Fellow Natives
  • Side Effects
• Videos
  • Cancer Treatments and a Woman's Fertility (Video. 13:14)
  • Dealing with School (Video. 2:44)
  • Eggs (Video. 0:25)
  • Family, Friends and Cancer (Video. 2:37)
  • Feeding Tubes (Video. 1:14)
  • Fertility Preservation (Video. 3:15)
  • How Did It Feel? (Video. 2:10)
  • Losing Your Hair (Video. 2:33)
  • Meet the Circle (Video. 2:08)
  • PICC Lines and Hickman Lines (Video. 2:59)
  • Treatment and Medication (Video. 4:44)
  • What If? (Video. 4:20)

• Emotional, psychological and spiritual care services from Seattle Children’s
• List of support groups at Seattle Children’s, including the Parent Support Program and Parent/Caregiver Coffee Hours.
• Sibshops
  Kid-focused celebrations of the contributions made by brothers and sisters of kids with special needs, including cancer.
• SuperSibs 
  Support group serving siblings of children with cancer.
• CaringBridge.org 
  Free, personalized websites that support and connect loved ones during critical illness, treatment and recovery.
• Cancer Care, Inc. (CancerCare.org)
  Nonprofit group offering support and education, online and by phone.
• Group Loop
  Support group for teens affected by cancer.
• Cancer Pathways
  Free program offering support for people living with cancer.
• Monkey in My Chair
  Nonprofit program to help kids with cancer stay connected to their classmates.

Contact the Cancer and Blood Disorders Center at 206-987-2106 for an appointment, a second opinion or more information.

To make an appointment, you can call us directly or get a referral from your child’s primary care provider. We encourage you to coordinate with your pediatrician or family doctor when coming to Seattle Children’s.

Providers, see how to refer a patient.