Where to start
Facing a diagnosis of childhood cancer, a blood disorder, or a vascular anomaly is overwhelming. Often parents and caregivers don't know where to turn for reliable health information to understand their child's medical condition and treatment plan. Many families facing a new diagnosis find they do not have time or energy to devote to extensive research even if they want to learn more. The Family Health Resource Center & Library at the Stephen D. Hassenfeld Children's Center for Cancer and Blood Disorders has suggestions for getting started.
Talk with your child's doctor and care team
Plan questions for your Hassenfeld doctor before your visit. Take the time to write down your questions and bring them with you to the appointment. Your doctor and care team members will also have good suggestions about how to answer your child's questions and how to help him or her prepare for treatment. You can also encourage your child to ask questions, too. MedlinePlus has even more suggestions for talking with your doctor.Talk with Hassenfeld's Family Health Librarian
Our librarian is available to help you find more information about your child's diagnosis. Try to schedule time to meet with the Family Health Librarian after your first few visits. Our librarian can help you focus your search, locate quality information, find information that is written in a child-friendly format, decode medical terminology, and even find answers to non-medical questions that may come up during treatment. You can contact our librarian in way that is easiest for you: in person, by phone, or by email.Search quality websites, not quantity
It's easy to get swept away on the Web. Try to focus your search by looking at a few reputable health information websites instead of everything on the web. The following sites are good places to start.- Curesearch (Children's Oncology Group)
Curesearch is the consumer web portal for the Children's Oncology Group, the world's largest childhood cancer research organization. The site provides information for children and young adults based on their age, their diagnosis, and their stage of treatment.
- MedlinePlus
MedlinePlus is a health information web portal created for consumers by the National Library of Medicine and the National Institute of Health. MedlinePlus provides information on drugs, supplements, health conditions, current news topics, that is easy to read, and more all free of advertising.
- National Cancer Institute
The National Cancer Institute provides extensive information in English and Spanish on all types of adult and childhood cancers. The National Cancer Institute is part of the National Institute of Health and supports cancer research.
- National Heart, Lung, and Blood Institute
The National Heart, Lung, and Blood Institute provides information on over 300 diseases and conditions that describe a health topic and its causes, risk factors, and symptoms. Information is provided in plain language and is created for patients and consumers.
- National Organization of Vascular Anomalies (NOVA)
NOVA is a patient education and advocacy agency for people affected by hemangiomas, vascular malformations, rare benign tumors and many related syndromes.