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Tyler Michael Powe
Thank You For Visiting Our Web Page. Journal Tuesday, July 29, 2003 0:45 AM CDT The docs found a tumor on Tyler's brain and sent us to Houston. They resected a little over 80 f the tumor on April 6, 2002 then he was diagnosed with Atypical Teratoid/Rhabdoid Tumor on April 8, 2002. He started a rigorous protocol on April 22, 2002. He had 2(two) 9(nine) week courses of poisons. In between the courses he had MRIs and CTs. They explained to us that Tyler's type of tumor is very rare...so rare that they don't know ANYTHING about it. Everything they did was purely experimental. Well the protocol seemed to be working because all of the MRIs were showing dramatic decreases in the size of the tumor that was left. We were about to start radiation. They usually don't like to do Radiation Therapy on children under the age of 3 but because of the type of tumor they had to be aggressive. For his last MRI the tumor had came back and spread down his spinal cord. He had 5 new tumors. The original tumor had hemmoraged as well as the one on his brain stem. They told us if they didn't stop bleeding he would die in 2-3 days. After a couple of days in PICU they let us know the bleeding had ceased but there was nothing more they could do. They said we could try to proceed with the radiation but from their experiences it wouldn't do any good. So we decided to take him home. We came home with his Home Healthcare instead of Hospice because he needed way more meds than his pain meds. Because one of his tumors was on his larnyx nerve he wasn't able to swallow which meant he couldn't eat or drink anything, so he had to have TPN. And since it was a Central Nervous System Tumor he had uncontrolled movement and needed Valium. We just wanted him to be as comfortable as possible. On October 20, 2002, 10 days after coming home Tyler passed away peacefully surrounded by friends and family. We will all miss him deeply for the rest of our lives until we meet again. Hospital Information:
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