5 Things Parents Should Know About Taking Charge of Their Child’s Care

The moment you hear the words “Your child has cancer,” your life changes forever. You are thrown into a strange world. It has a new vocabulary with words like chemotherapy and oncologist.

You may be scared and confused. It’s OK. That’s normal. But don’t be afraid to ask questions. Don’t be afraid to tell your care team what your child needs. You are your child’s most important advocate.

Here are 5 things every parent or caregiver should know about taking charge of their child’s care and treatment.

1. You are the expert about your child. Tell your child’s care team if you notice any changes, even small ones, in your child. These could be physical, emotional, or psychological. Don’t assume changes in your child are unimportant. You know your child better than anyone.
2. Continue to ask questions, even if you’ve asked them before. Your child’s care team wants to meet you where you are and answer your questions about care and treatment. No question is too big or small.
3. Each person processes information differently. To communicate well with your care team, you need to know how you process information. For example, do you remember better when you write things down? Then take notes when you meet with your care team. Do you need extra time to think about what you’ve been told? Then feel free to sit with the information and develop a list of questions to ask later.
4. Find reliable resources. It is tempting to Google things. But that could lead you to unhelpful or false information. Ask your care team where to find reliable sources. Bookmark trusted websites and print educational material when you need it. The Together by St. Jude™ online resource provides free information for anyone facing childhood and adolescent cancer, no matter where they receive treatment. Visit together.stjude.org for more information.
5. Take part in your child’s care. When possible, take a hands-on approach to caring for your child. Tell health care providers what is going with your child physically, mentally, and socially. If you don’t understand something your care team tells you, ask them to explain it again. It’s important to understand the information. Then you can use that knowledge to make informed decisions about your child’s care.