DIPGs are relatively rare, and the diagnosis and treatment of DIPG is complex and involves multiple specialists. Patients and families should look to comprehensive, experienced pediatric medical centers with dedicated pediatric neuro-oncologists, neurologists, neuroradiologists, and neurosurgeons to receive a definitive diagnosis and care.
Radiation therapy is the only proven beneficial treatment but unfortunately for limited duration. The radiation kills some of the cancer cells, shrinking the tumor and reducing pressure on the brainstem. This can greatly improve how the child feels and functions for a few months, and 75-85% of patients show improvement in symptoms after radiation therapy. Because even carefully aimed radiation therapy causes some damage to the healthy brain tissue surrounding the tumor, there is a limit to how much radiation therapy can be given to each patient. Unfortunately, the cancer almost always grows back after a few months.
Following radiation, some families may explore clinical trials. Clare is currently enrolled in a clinical trial at Cincinnati Children's Hospital Medical Center.