Brain tumors are the deadliest form of cancer in children. There are many different types of brain tumors and some are benign. Unfortunately many are malignant. The type of brain tumor William had is called Glioblastoma Multiforme, GBM, and is always a grade IV at diagnosis.
GBM tumors grow very fast and spread to other areas of the brain and sometimes the spine. Treatment consists of surgical removal of the tumor if possible followed by radiation therapy and chemotherapy. Genetic testing of the tumor tissue can be performed and sometimes there are therapies that target specific mutations, but GBM almost always recurs. Typically survival after diagnosis is 11 - 18 months. At diagnosis our team at Children's National Hospital said Will's expected survival was 6 - 12 months, but they ALWAYS gave us a ray of hope that he might be the one to beat it.
Our Team Will at Children's National was the best in the world, and we are forever grateful to them for trying everything they could to save him. After his cancer returned in the fall we were fortunate that Will could enroll in several clinical trials, giving us time for a wonderful Christmas and a high quality of life for almost all of his 12 years on earth. I know Team Will ached with us when Will died. Our primary Team Will was Dr. Eugene Hwang, Christine O'Neil, Julia Mascia, and Dr. John Myseros. Thank you for all you did for our family during the last year and a half.