In 2009 many brain stem cancers in children are, for all intents and purposes, a certain death sentence.  This year, for example, approximately 200 children will be diagnosed with pontine gliomas (a glioma in the pons of the brain); and this year approximately 200 children will die from the disease.  For pontine gliomas, the only known effective treatment is radiation, which tends to extend life by about 6 months.  The vast majority of children diagnosed with this disease will be dead within 18 months of diagnosis.

The following is some information about pediatric brain stem cancer:

Aside from accidents, cancer is the leading cause of death in children, and brain tumors are the largest cause of cancer-related death in children. In 1997 brain tumors accounted for 24 percent of cancer-related deaths among persons up to age 19. [1]

Every single day nine children in the U.S. are diagnosed with a brain tumor. [2]

Brain stem tumors are the most dreaded cancers in pediatric oncology, owing to their historically poor prognosis. Brain stem tumors account for about 10 to 15% of childhood brain tumors. Peak incidence for these tumors occurs around age 6 to 9 years. The term brain stem glioma is often used interchangeably with brain stem tumor. [3]

Pontine tumors (cancer of the pons) are the most common variety of childhood brain stem tumor. They also carry the worst prognosis; in children, the median survival duration is 9-12 months even with treatment. A recent study reported a 37% survival rate at 1 year, 20% at 2 years, and 13% at 3 years, with a median survival of 10 months. Only 9 of 119 patients in the study were alive for more than 3 years after diagnosis. [4]

Pediatric brain stem cancers are rare, yet incredibly lethal.  Treatment of brain stem gliomas has been frustrating; at this point, new therapies have yielded little benefit over conventional treatment with radiation alone.  Because they are not common, research and treatment of these fatal “orphan” diseases do not attract the kind of financial support provided to more common cancers.