Making Difficult Decisions

Your child has a rare and challenging tumor and many difficult decisions will have to be made along the way. It is helpful to have conversations about the different types of situations that may come up before they actually do; that way your family and your child (if he/she is old enough to help make decisions about his/her health) will be able to talk about these situations openly and honestly. Some of these decisions may be difficult to talk about, so talking about them early, when there is no urgency, can make it easier if the need arises to make urgent decisions. Your social worker will be a wonderful resource to help you, your family, and your child talk together about difficult decisions. These are some helpful tips about making difficult decisions.

  • Honesty: Have open discussions with your family and your child (if he/she is old enough to understand and participate in decisions about his/her health) about your child's diagnosis of DIPG and what the prognosis is, according to your doctor or nurse practitioner. Most children are thinking about these things, even if they are not talking about them. Sometimes your child's imagination may be worse than reality, so talking about what may or may not be happening will actually help him/her worry less. Be honest and do not lie to your child. Children are usually very good about figuring out when parents are lying to them.

  • Hope for the best and prepare for the worst: Your health care team is working very hard to treat the DIPG and help your child. They may or may not have given you statistics about cure rates and/or relapse rates for DIPG. However, statistics really do not mean a thing, because for your one child, there will either be a 100% cure or not. Try not to let statistics keep you from enjoying life in the moment. Enjoy every day with your child. Keep your hopes up that your child will be that 100%, but talk with your health care team about what to expect if your child does not survive the DIPG.

  • Five Wishes™ or My Wishes™ or Go Wish™ Cards: Some children and families find it hard to talk about making difficult decisions and/or facing end-of-life care decisions. Be sure to talk with your social worker about your concerns.You may also find it helpful to talk with a counselor or psychologist. Several other tools can also help you with these conversations, such as Five Wishes™ and My Wishes™, which are decision-making tools. Five Wishes™ is a set of questions for older children, adolescents, and young adults, and My Wishes™ is better suited for younger children or developmentally delayed children. These tools have several different questions about who your child might want to make decisions for him/her if he/she is not able to, and other health care decisions he/she might want people to know about. Go Wish™ Cards are like playing cards that have phrases about health care decisions written on them. Ask your health care team if you can have a copy of these tools to use at home. Your local hospital might use other tools that are equally as good as the ones mentioned here.

  • Other books and pamphlets: Several wonderful books are available to help you with making difficult decisions. Ask your health care team to recommend some of these to you.

While the journey through DIPG treatment can be physically and emotionally challenging for both you and your child, the advice listed above can help you feel more prepared to care for your child at home. Remember that your health care team is there to support you through this difficult time, as are parent support groups led by others who have walked the same path your family is now walking. Reach out and ask for the help you need to best care for your child with DIPG.