Diffuse Intrinsic Pontine Glioma
Simply put, DIPG is a cancer of the pons – the area directly above the brainstem – and is considered one of the most dreaded forms of childhood cancer due to the historically poor prognosis. DIPG is very rare and affects approximately 300 children per year in the United States. There is no known cause; it affects girls and boys equally; spans all social, racial, and religious groups; and has a peak incidence around 6 to 9 years of age.
Cancerous tumors are classified and named based on their pathology and location. This tumor is diffusely spread throughout the pons and initially forms in the glial cells that support the central nervous system. DIPG is also called diffuse pontine glioma, diffusely infiltrative brainstem glioma, and brainstem glioma. The Marc Jr Foundation, and most of the organizations that we collaborate with use the name diffuse intrinsic pontine glioma (DIPG).
Having your child diagnosed with DIPG is earth shattering. Everything in your life has been reprioritized. When it comes to the health of your child, you know them better than anyone else in the world including your doctor. Trust your judgment, ask questions, and don’t be afraid to seek second opinions.
Radiation or Radiotherapy
Progression after Treatment
Unfortunately, most children will experience a recurrence of the tumor and a return of their symptoms. For most, the symptoms will return at a faster rate and with greater severity than they originally appeared. We recommend focusing on palliative care – health care focused on reducing the severity of the symptoms rather than to halt or reverse their progress – and on being together as a family.
Your job as a parent is to remain focused on keeping your child feeling safe and loved. This time is no different.