Evan Burch

First post: Sep 30, 2016 Latest post: Jul 6, 2021
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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 a​n​ 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 ​a​ffected by chordomas​,​ they decided to have surgery at ​U​niversity of Pittsburgh ​Medical ​Center with ​D​r​.​ Paul Gardner- a chordoma expert. On June 9th 2016, just 1 day after, their daughter Shelby turned 1 and 3 days after ​their daughter M​aggie turned 4, Evan had surgery.  Dr​. Gardner​​ was able to remove the tumor! Evan was discharged two days later but never bounced back​. H​e had terrible headaches and stopped eating and drinking.  A week after the first surgery​,​ they rushed him to the ER​.​ ​H​e 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 I​V​ antibiotics 3 times a day. On his birthday, July 11th, he was hospitalized for a blood clot. Since then, things have been better.  His I​V​ 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​. 

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