This program was created by families who have walked this path before you. But no family or experience is the same. As some parents have reflected on their own journeys, they wanted to provide recommendations for you to consider.
Some of these suggestions may resonate with you; others may not. The important message that families would want to convey is that as you identify your family’s unique priorities and needs, we encourage you to take steps to honor those wishes and communicate them to others so they can support you in the way you desire.
Settling Into Your Journey
- You might consider discussing the diagnosis with immediate/close family first. This conversation may help shape your family’s approach to talking about the situation with a broader network of family, friends, and others in the community.
- When discussing the diagnosis with your child or children, ensure your language is age appropriate. This can help create unity within the family that you are in the fight together.
- Some families consider when or if they want to share the specific brain tumor diagnosis of DIPG/DMG with broader groups of friends, family, and their community. Factors often include concerns about what might be said to a child or siblings about the prognosis or how a child might be treated if the prognosis is known.
- Only you will know how much information about the DIPG/DMG prognosis to share with your child. Parents often consider whether survival statistics are appropriate to discuss, or if they might scare your child too much (or siblings).
- Older patients are more likely to understand the gravity of the diagnosis and may want to share their diagnosis with their friends. Some patients may wish to live a private and normal existence, while others may want those around them to know what they are facing.
- It is recommended to honor and respect the patient’s wishes about how to communicate about their diagnosis.
- Many want to support a family by providing food. Some families find ”meal trains” by supporters to be helpful in easing the burden of organizing and deciding about daily meals. Supporters want to be helpful; if your family has dietary restrictions or preferences, let people know so they can be included in the meal signup instructions. For some families, a meal train may not be the ideal option, but alternatives like Uber Eats, Door Dash, or other restaurant gift cards could work.
- Depending on employment circumstances, parents may need to discuss the likelihood of missing work with employers.
- Contact your child’s school team members to discuss the family’s wishes regarding treatment/care during the school day. School districts may be able to provide support in school, as well as options for school services in the home if necessary.
- Bringing the child to medical appointments can be a full-time job. You may wish to reach out and seek help from friends and family.
- Siblings may be navigating this journey alone and may often hide their feelings so they won’t burden their parents. Be proactive in sourcing playdates, rides, and homework help, etc.
- You and your partner may find it difficult to console each other. You may go through many different reactions and emotions on different timelines and at different stages. This is not uncommon. You may wish to reach out for support from a therapist, your religious institution, friends, siblings, or other parents. Surround yourself with authentic and loving people, and give yourself the grace you need.
- Find your support system. You might find that some of your closest friends just won’t get it. There may also be strangers or acquaintances who will come into your life and prove to be the kind of supportive friend you need.
- Many parents get through this difficult journey by focusing on the present moment. Some find comfort by making the most of today, and trying not to worry about what could happen tomorrow. It can be helpful to join a support group of people going through a similar journey.