Advice from Other DIPG Parents

The parents we spoke with shared some very personal insights into their experiences that may be helpful advice for others parents. Some of these are reflections or quotes about a parent’s outlook or important things that they tried to keep in mind while going through this same process with their child.

About Relating to Children

  • Know your child, their personality, interests, coping styles, and preferences for support.
  • Have important conversations sooner rather than later. Have important conversations about topics such as illness, life, death, your love for them, and spirituality as early as possible. Although these can be emotionally difficult conversations to have, they get even more difficult once children have a harder time communicating.
  • Keep communicating. When a child can no longer express themselves to others, it can be hard to know whether or not to continue to talk to them. Communicating through story-telling and touch (including a hug, gently squeezing or rubbing a child’s arm) can convey love, warmth, affection, and provide great comfort to a child.

About Relating to One Another as Parents and as a Family

  • Try to work together—as a couple, as parents, and as a family.

Asking Questions and Asking for Help

  • Whatever you want to know, ask. If there is anything you have wondered or worried about, do not hesitate to ask a member of your child’s health care team.
  • Whatever you need, ask. Different services will be available depending on the hospital or the community where you live. Ask a member of your child’s health care team to help you find resources near you.