On July 26, down a seventh-floor hallway at MUSC within hours of each other, two local boys were diagnosed with the same highly rare and devastating brain cancer. Measure life in a year, or less, their parents were told. The families - one on James Island, one in Mount Pleasant - have never met. Battling the same enemy, each has searched for light, for air, for hope, down different paths.
What is diffuse intrinsic pontine glioma?
Diffuse intrinsic pontine glioma is a childhood brainstem cancer that invades nerves controlling vital functions such as breathing. The tumors are highly aggressive and difficult to treat.
The median survival is nine to 12 months after diagnosis, although a small percentage survive one to three years. About 200 to 300 children nationwide are diagnosed each year.
DIPGs are most often diagnosed in children ages 5 to 9, but they can occur at any age in childhood. They tend to affect boys and girls at equal rates.
Common symptoms include:
rapidly developing problems controlling eye movements, facial expressions, speech, chewing and swallowing
weakness or abnormal positioning in arms and legs
problems with walking and coordination.
The cause remains unknown. New treatments have remained elusive for decades.
Source: MUSC, Boston Children's Hospital, Johns Hopkins University
Sam Lee, who just turned 3, watching his beloved Curious George while eating lunch. Sam was diagnosed with brain cancer this summer and has since undergone radiation and chemotherapy to shrink his tumor. Grace Beahm/Staff×
Erin Benson kisses her son Sam Lee, then 2, while they play in the living room of their James Island home.×