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Below you will find our Family Resources page where we have compiled information and links to resources designed to help you navigate the road ahead. You can always find this page on our website in the Family Support area.
If you need more information about how CURE can support you, please email Lisa Odendahl at [email protected].
At CURE Childhood Cancer, we know the shock, fear, and uncertainty that exists when you learn your child has cancer. It is not something any parent is prepared for or expects to face. We understand because many of us have been there.
Every family’s journey is unique, but no family fights cancer alone. There is a large community of support for those fighting childhood cancer, and it starts right here at CURE. To help, we have compiled this page of resources and tips to help you navigate the road ahead. As always, please speak to your child’s medical team for medical advice and guidance.
When your child has cancer, no one understands your life better than another parent going through the same experience. Connecting with other parents of children with cancer can be one of the best ways to deal with the challenges you face. Here, parents who have been through cancer treatment with their child offer some helpful advice.
Stay flexible. Understand that treatment plans and timelines often change as a result of low counts or other factors.
Don’t be afraid to ask questions! There’s no such thing as a dumb or silly question. It is also perfectly okay to ask the same question over and over.
Preparing for hospital stays can help make you and your child more comfortable. Here is a list of items you can pack as you get ready for your stay. You may also want to keep a bag packed and ready for unexpected admissions.
A childhood cancer diagnosis is an overwhelming event. Everything is new and confusing, and information feels like it is coming at a mile a minute. The Children’s Oncology Group (COG) is a clinical trials group supported by the National Cancer Institute (NCI). It is the world’s largest organization devoted exclusively to pediatric cancer research. Almost all centers that treat children with cancer in the US and Canada are part of the COG.
The COG has developed a New Diagnosis Guide to help newly diagnosed families understand the landscape of childhood cancer. You can download this helpful guide or request a printed copy.
This Smartphone App was designed by the Children’s Oncology Group (COG) for parents and caregivers of children with cancer. The app is available in both iOS and Android versions and includes the entire contents of the COG Family Handbook and New Diagnosis Guide in searchable format (in English, Spanish and French), as well as features for journaling, appointment tracking, one-touch dialing to the healthcare team, and much more. Click below to get the free app at the Apple Store or Google Play.
Clinical trials are research studies that involve people. Any time during your child’s cancer treatment, clinical trials are an option to think about. Learning all you can about clinical trials can help you talk with your doctor and decide what is right for you. The National Cancer Institute’s website keeps an updated list of available clinical trials that you can search.
Please talk to your healthcare team regarding interest in a clinical trial.
Reading about children with cancer or about cancer itself can sometimes make it less scary for young children. The following is a list of resources, most of which should be available on Amazon.com or your favorite bookseller.
The Coalition Against Childhood Cancer’s Hope Portal is a searchable database which strives to connect childhood cancer families to the information and vast array of support resources they need–faster than ever. The Hope Portal provides access to a robust list of organizations around the country that provide resources and assistance to children with cancer, survivors, and their families.
If you are a friend or family member of a family recently diagnosed with childhood cancer, you may be at a loss for what to say or the best way to offer your support. CURE’s Director of Communications, Mark Myers, experienced the cancer journey in 2014 with his youngest daughter, Kylie. During that time, he wrote three posts to help people show love and support “when there is nothing to say.”
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