Important Update

We’ve spent the last 2.5 years grateful for clean scans and holding our breath for continued health.  Unfortunately toward the end of this past October we noticed Nolan experiencing some facial weakness.  We had a planned MRI on 11/03, while we hoped for the best we were shocked to find out a brain tumor had returned, this time in a different spot and wrapped around the facial and auditory nerves.  Our oncologist was optimistic letting us know that Dr. Storm could likely operate and remove most of the tumor but we’d need to check the spine before proceeding.  A few days later Nolan underwent a spinal MRI and by the end of the day we were notified that unfortunately there were numerous tumors in toward the bottom of the spine in the fluid.  This was devastating news to us as once ependymoma returns and also is in the spine it becomes very difficult to treat. We were given some options from the staff at Children’s Hospital and decided to proceed with surgery to remove what can be removed of the brain tumor and to participate in a trial that CHOP is currently hosting. The trial involves taking tissue from the tumor and testing amongst 300 different drugs or medicines which we prefer to say as Nolan is alarmed by the use of “drugs”. Words matter to a 10 year old right? A tumor board will review the results and select four drugs which are best determined to attack the cancer cells. We hope to begin the trial about three weeks after Nolan’s next surgery which is scheduled for December 8th.  We appreciate your continued support, thoughts and prayers for Nolan and our family.