There are so many thoughts for a "first post". I can't flush any of them out, so I thought I would give a very brief background of Diffuse Intrinsic Pontine Glioma (DIPG).
The pons of the brain is a control center. It assists with message passing. Moving signals back and forth from brain to body and back. We commonly think of this part of the brain as the "brain stem". Heart beat, breathing, and other autonomous functions are all controlled in part by this area of the brain. Pontine is just a reference to the pons area of the brain.
Glial cells are the supportive structure in the brain. Think of the steel cables of a suspension bridge. They provide definition and protection to the structure (way oversimplified). Glioma is a tumor involving glial cells.
Diffusely intrinsic. Not something you want to hear about your tumor. It means that the cancer has become one with its surrounding and supportive structures. It is not a standalone thing that can be excised, without excising all the good stuff, too. In this case, that just isn't possible. The pons is a necessary component of human life.
The brain is very good at protecting itself and medications that may otherwise treat cancer (chemo), are generally ineffective due to the blood-brain barrier. DIPG is rare enough, only 200-300 cases per year in the United States, that research is underfunded. The relatively few number of cases also makes a difficult argument for drug companies to spend R&D dollars. And if they did, the cost of the medications would likely be extremely prohibitive.
This doesn't mean DIPG research doesn't exist. Michelle Monje at Stanford has dedicated her life to DIPG. And she is discovering new and exciting things. But the pace is slow. Agonizingly slow for a child with terminal brain cancer.
That said, there are some interesting new medications being adapted for use against DIPG. There is no evidence that they are "the cure" but we remain hopeful that their use could be a stop-gap until another discovery is made. We must remain strong.