Advocating for children with cancer is personal, whether it’s for improved legislation or an individual child’s medical needs. An advocate can be someone who reaches out to Congress, shares their story to spread awareness, organizes an event to raise funds for research or speaks up to get a child the best medical care possible.
A good advocate is willing to plead, speak or even argue in order to support their child. Children’s voices aren’t often heard so sometimes a parent needs to speak up for them. The parent knows the child best and should be a critical member of the child’s care team.
It is overwhelming for a parent to navigate the pediatric cancer experience but parents are a child’s best advocate as they go through treatment. A good start is to get to know the healthcare team. This includes social workers, nurses, specialists and the oncologist. Don’t be afraid to ask questions and develop an open line of communication. It is also important to learn about care options, keep good records, connect with other parents and develop a strong support network in order to effectively advocate.
Patient-centered care is when the family and healthcare providers work together to best care for the child. It is a parent’s right to take part in all aspects of the decision-making process regarding their child’s care and treatment by sharing information and asking questions. Parents have the right to ask to see another doctor, change doctors or hospitals, get a second opinion or have something explained more clearly.
Fallon Kelly is the mother of a 13-year-old girl who has been battling neuroblastoma since 2014 and understands the importance of advocating. Her daughter Lauryn has been on treatment for almost seven years and she has advocated a on her behalf several times. When treatments weren’t working, Fallon had to make the difficult decision to tell their doctor they were not going to pursue the recommended treatment plan. Fallon says it was very uncomfortable to continue seeing that doctor for follow-up care after having the conversation but she had to do what was best for her child.
Lauryn has been through a lot and her mother is always by her side making sure the medical team is providing the best possible care. A few years ago, Lauryn started to sleep too much and had a knot on her neck. Fallon started to do her own research and had to make recommendations to the doctor because she didn’t feel like they were treating her child properly. The doctor listened to Fallon and ended up doing a CT that found Lauryn had a bacterial infection in her lungs. Fallon understands that it is tough to question doctors because they are the experts. She encourages other parents to remember that another perspective can actually be helpful. “You know your child best and should choose a physician who you feel comfortable with and who listens to your concerns,” advised Fallon “If you are too afraid to speak up to the physician find another staff member like a social worker or nurse you trust to help you. There needs to be someone in your child’s healthcare team that you can trust and speak openly with.”
Legislation, health insurance, school issues and bullying are also areas where parents can advocate for their children. Qualities of exceptional advocates are being passionate, well informed, goal-oriented, great communicators, flexible, connectors, inspiring and persistent. By speaking up and being an effective advocate you can be an example, teaching your child how to advocate for themselves.
Additional information on advocacy and other helpful resources can be found here.