Hemophagocytic Lymphohistiocytosis Patient & Family Handbook

n HOW CAN I WORK WITH MY CHILD’S HEALTHCARE TEAM? Your child’s care requires a team approach. As a parent, you are a very im- portant part of the team. Other members of the team may include doctors, nurses, social workers, child life specialists, therapists, and others. Because you know your child better than anyone else, your healthcare team will need your help to give your child the very best comprehensive treatment for his or her disease.

It is important to have two-way communication with your child’s healthcare team. Be sure to ask your child’s doctor or nurse questions whenever there is anything that you are not sure about. It helps to write down questions when you think of them. The following are some examples of questions to ask: • What is HLH? • What parts of my child’s body are involved? • What type of HLH does my child have? • What treatment choices are available? • What treatment do you recommend and why? • What risks or side effects does the recommended treatment have? • What should we do to prepare for the treatment? • What is my child’s chance for survival? • What are the chances that the disease will come back? • What long-term effects might occur as a result of treatment?

Use this space to write down some other questions that you might have.

5

Powered by