Navigating the Disease

Facing a DIPG or DMG diagnosis is overwhelming. A team of doctors who specialize in DIPG and DMG offer a set of Best Practices for you to consider as you get started.

While not every path is the same, a typical DIPG or DMG diagnosis may involve a CT Scan, an MRI and, potentially, a biopsy. Because of the aggressiveness of the disease, it is important to quickly gain an understanding of this new landscape to help determine next steps.

Families facing a DIPG or DMG diagnosis have choices when it comes to treatment. Our Nurse Navigators are here to help you understand your options, connect you to appropriate resources, and support whatever decisions you choose to make.

This journey can often cause a financial strain on the family. There are a variety of resources that can help.

Without a significant amount of data from DIPG and DMG tumors, scientists cannot fully understand how the tumors behave, how to prevent them from forming, and how to treat them while minimizing side effects. Some families choose to help by sharing their own data throughout their journey.

Pediatric palliative care can help minimize pain or discomfort your child experiences due to their condition, and can provide social and emotional support for the entire family. It is another support system to use throughout your child’s journey.

Disease progression is a worsening, growth, or spread of the disease and can happen at any time after initial diagnosis or treatment. Treatment options will differ depending on the number of progressions and prior treatments received.

There may come a time when you change your focus to comfort care. This occurs when families are either making the difficult decision to no longer focus on treatment or have reached the point where there are no additional treatment options.