how to advocate for your child
We know how overwhelming it can be to hear the words “Your child has cancer.” As parents, you are your child's best advocate. As you navigate your family through treatment and care, we want to share some tips that may benefit you.
First, get to know your healthcare team. In most cases, a pediatric oncologist will manage the medical care of your child, but the members of your child’s healthcare team may also include nurses, social workers, and other specialists. Develop a good relationship with them and build up a good rapport. You are encouraged to ask them as many questions as you need to about treatment plans and clinical trial options.
Learn about care options
If your child is newly diagnosed, there are standard protocols at almost every children’s hospital in the U.S. These up-front treatments usually combine chemotherapy, surgery and radiotherapy; sometimes as part of a phase III clinical trial.
Down the road, if the cancer is no longer responding to treatment or has returned, your child will be eligible to enroll in a phase I or phase II clinical trial. Learn more about clinical trials.
Talk to a social worker
Each hospital has a social worker whose main role is to help patients and their families navigate the logistics of their child’s treatment and care. Social workers can also act as counselors to help you cope. They may be able to identify local and national organizations that provide assistance with lodging, travel, financial support or more. If you are unable to get in contact with your hospital’s social worker, www.cancercare.org is a national organization with a staff of social workers who can offer free support in person or over the phone.
Keep your own records
Your child’s treatment may include visits to different hospitals and doctors. Keeping your own records can provide you and your health care team with vital information. If you collect printouts of daily reports, copies of scans, treatment protocols, and a daily diary of notes and observations, you can help ensure continuity of care for your child.
Connect with other parents
When your child is diagnosed with cancer, you may feel isolated and alone. This is absolutely normal. Talking with other parents can broaden your support network, offer hope and insight, and even connect you to additional information and resources. The Association of Online Resources (www.acor.org) is a unique collection of more than 100 different online communities categorized by cancer type, and one that we found most helpful. There are also countless pages on Facebook that are dedicated to connecting with others who may be in similar situations. Search by pediatric cancer type in the search bar to see if there are any suitable options that might help you to connect with others.
Build a Support Network
Your friends and family members may be anxious to hear updates on how you and your child are doing. In the midst of caring for your child, you may find it challenging to call or email all of your friends and family. Consider creating a CaringBridge.com page or Carepage to keep people updated. You can change the privacy settings so that only people you know can view your child’s page. Creating a CaringBridge page or Carepage is easy and free, and offers an opportunity for loved ones to offer encouragement and support. Visit www.caringbridge.org or www.carepages.com to learn more.
Talking to a social worker, connecting to other parents or contacting nonprofit organizations can also help you build a support network. There are also organizations that help provide more direct support to children with cancer, such as www.chemoangels.org, which pairs a child with a pen pal. For siblings of children with cancer, Supersibs offers emotional support and information about camps to help children cope. Visit www.supersibs.org to learn more.