July 22 is National Glioblastoma Awareness Day

GBM took this beautiful boy's life, and the lives of many, many others, way too early.  Today please take a moment to honor those who battled and are still battling this devastating disease.  To find out more about National GBM Awareness Day go to  https://braintumor.org/take-action/gbm-awareness-day/

Will's Brain Cancer

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.

Finding a Cure

Although brain tumors are the deadliest form of cancer in children, it is a vastly underfunded area of cancer research - receiving only 0.08% of the National Cancer Institute's research budget. Fortunately there are people and foundations working tirelessly to find a cure for this deadly disease. If you are considering making a donation in Will's honor, or simply want to support finding a cure for pediatric brain cancer, the foundations below are near and dear to us and helped our family immensely.

 The Lila Bean Foundation and Dragon Master Foundation both fund critical pediatric brain cancer research and are raising awareness about the disease.

 The Mid-Atlantic Make-a-Wish Foundation provided our family with the trip of a lifetime to the Galapagos Islands during Will's last summer. Though not strictly a cancer foundation, Make-a-Wish provides many kids with hope and love during a really difficult time of critical illness.