From the time your child begins receiving care through Seattle Cancer Care Alliance, you can expect the health-care team to talk you through each step of the way.
“Our doctors do a really nice job of sitting down with parents and explaining things,” says Fred Wilkinson, LICSW, social worker at Seattle Children’s, an SCCA parent organization. “Our goal is to make sure they are part of our medical team.”
The first conversations usually focus on the diagnosis, treatment options, and whatever needs to happen right away. Each topic can raise additional questions. As you and your child move through the experience, the sheer volume of information may feel overwhelming at times. That’s normal. Especially when emotions are running high, it can be hard to think of what to ask and hard to remember the answers.
Wilkinson encourages parents to be proactive. “Ask any question that comes,” he says. “It’s okay to ask a question 10 times if you need to.” For ideas on what to ask you child’s doctor, Wilkinson and certified child life specialist Katy Tenhulzen suggest the following list as a starting point. To help keep track of the answers, you may want to bring a notebook and pen. Diagnosis
- What tests does my child need, and why?
- What’s the diagnosis? How do you know?
- Are there other names for my child’s condition?
- How is this affecting my child’s body?
- What needs to happen next?
- What are the treatment options?
- Which options do you recommend, and why?
- What are the possible side effects?
- How long will treatment last?
- How long will we need to stay in Seattle, if we live outside the city?
- How will we know whether the treatment is working?
- How can our family best support the child’s health and help the child cope with this experience?
- What resources are available in the hospital and the community to help us?
- Which of my child’s usual activities can he or she still do?
- If we already use or want to use complementary or alternative medicine, is it okay to do this to support conventional medical treatment?