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9/30/2016 Latest post:
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Evan's tumor was discovered after he had a couple of bouts of double vision, both lasting about 2 weeks. Once in November of last year and the second in January of 2016. Evan saw several doctors until finally an eye specialist ordered an MRI, which revealed an abnormal lesion at his brain stem. They saw many neurosurgeons, locally and further away. They learned the that the lesion was a chordoma - a rare (one in a million) malignant cancer. After researching and speaking to several doctors and people affected by chordomas, they decided to have surgery at University of Pittsburgh Medical Center with Dr. Paul Gardner- a chordoma expert. On June 9th 2016, just 1 day after, their daughter Shelby turned 1 and 3 days after their daughter Maggie turned 4, Evan had surgery. Dr. Gardner was able to remove the tumor! Evan was discharged two days later but never bounced back. He had terrible headaches and stopped eating and drinking. A week after the first surgery, they rushed him to the ER. He was sent to the operating room for emergency surgery to repair a spinal fluid leak at the sight of the surgery. He was in the hospital a week before being discharged. They returned home on June 28th. Evan was almost 30 pounds lighter and on IV antibiotics 3 times a day. On his birthday, July 11th, he was hospitalized for a blood clot. Since then, things have been better. His IV was removed and he is gaining weight. He is working full time now but will have to travel to Boston for 2 months for proton beam therapy radiation at Massachusetts General hospital - one of only a handful places in the world where this treatment is available.