Baby Bobby was diagnosed with a Rhabdoid tumor when he was just 20 days old.
Our 2nd son Robert (Bobby) was recently diagnosed with a Malignant Extrarenal Rhabdoid Tumor. He was born on May 2, 2018.
Shortly after coming home from the hospital, we noticed Bobby's belly was extremely firm, like a baseball wrapped in skin.
Initial CT and ultrasound at GBMC revealed a mass in his liver region, and we were sent to Johns Hopkins Children's Hospital in Baltimore, Maryland. A biopsy was performed in the coming days, and the following week we were given the tragic news.
Bobby is undergoing a treatment plan that has not been updated since 2003 -- even with a dismal 20 percent survival rate of childhood Rhabdoid tumors.
So little is known about these tumors.
We pray for the day that no family has to go through this.
July 25, 2018 Update: At just 12 weeks old, Bobby's spent his first summer of life in and out of the hospital and the Pediatric Intensive Care Unit at Johns Hopkins receiving rounds of chemo. He's been diagnosed with veno-occlusion disease (VOD of the liver), a treatable but serious side effect of one of the chemo drugs he's on.
August 15, 2018 Update: Bobby's condition has worsened and his liver tumor has grown. His family is now preparing for surgical removal of the tumor, a risky procedure that will require the removal of approximately half of his liver -- but will give him a fighting chance. "Without the surgery, there is no chance of survival," his family reports.