Cancer and Blood Disorders Center
Patient and Family Education
We want you to have all the information you and your child need to understand your child’s condition and to participate in treatment. This page provides links to resources that we hope will be helpful.
Resources at Seattle Children’s
Condition-Specific Resources
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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.
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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.
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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.
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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.
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Bone tumors
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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).
- Childhood Leukemia: A Guide for Families, Friends and Caregivers by Nancy Keene
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Thalassemia
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White blood cell disorders
General Cancer Resources
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Books
Many of these books can be found at your local library or bookstore. Here, we've provided links to Amazon.com.
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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
Formerly known as Candlelighters, ACCO is the nation’s oldest and largest grassroots organization dedicated to childhood cancer. Paul and the Dragon is a 25 minute video created by ACCO to help children understand the world of childhood cancer in a safe way, with humor but also with truth. - 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. - Vascular Access Service (Central Lines) at Seattle Children’s
- Alex’s Lemonade Stand
Treatment-Specific Resources
- 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. - Changing the cap
- How to Change the Cap on a Central Line (PDF)
- How to Change the Cap on Your Child’s Central Line (Video; 4:56)
- Cómo cambiar la tapa de la línea central (Video; 5:03)
- How to flush the line
- How to Flush a Central Line (PDF)
- How to Flush Your Child’s Central Line (Video; 4:17)
- Cómo irrigar la vía intravenosa central (Video; 4:28)
- Changing the dressing
- How to Change a Central Line Dressing With Chlorhexidine (CHG) (PDF)
- How to Change a Central Line Dressing – Alternative Dressing Change (PDF)
- How to Change the Dressing on Your Child’s Central Line with Chlorhexidine (CHG) (Video; 8:22)
- Cómo cambiar el apósito con clorhexidina de un catéter intravenoso central (Video; 8:23)
- Kidney Biopsy (PDF)
Also available in Spanish (PDF).
Explains what a kidney biopsy is and how it’s done. Includes what happens before and the day of biopsy, and how to care for your child after the biopsy. - Liver Biopsy (PDF)
Also available in Spanish (PDF).
Explains how a liver biopsy is done through the skin (percutaneous), how to prepare your child for the procedure, checking in for the day of the procedure and how to care for your child after the procedure. - Lab Access for Port Access (PDF)
Also available in Spanish (PDF).
Explains how to get ready for a visit to lab to access your child’s port. Includes tips for helping your child make a “port plan” to help cope with clinic visits. - 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. - 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)
- Transfusion Instructions: Signs To Watch For After A Blood Transfusion (PDF)
Also available in (Simplified Chinese) (Spanish) (Vietnamese) (PDF).
This handout describes how to care for a child after a blood transfusion, and what signs of a reaction to watch for. - Occupational and Physical Therapy in the Cancer and Blood Disorders Center and Unit (PDF) (Spanish)
- Occupational and Physical therapy after bone tumor orthopedic surgery (Spanish) (PDF)
Resources for Teens and Young Adults
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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.
- 13thirty Cancer Connect
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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
Support and Support Groups
- 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. - Cancer Support Community
Support and resources for people 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 Us
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.