Isaiah is an amazing 16 year old boy, he is a Sophomore at Staley High School in Kansas City Missouri where he has many friends. He could not wait to turn 16 so that he could get his first job and save up money to buy a car. He works after school as a greeter at the Texas Roadhouse in Liberty. Isaiah always has a smile and can eat more chicken wings than anyone you know! Really! This past week Michelle, Isaiahs' mom received a call from the doctors office confirming her worst fears. Isaiah had been diagnosed with a rare cancer called Malignant peripheral nerve sheath tumors also known as a Sarcoma. Isaiah has spent much of his life in and out of the hospitals due to an injury to his leg he had at age 6 which ultimately led to the amputation of his left leg a year ago. One wouldn't know all of these things just by talking with him. Why you might ask because he rarely complains about his situation or circumstances. Isaiah made the brave decision to have his leg amputated the day after his 15th birthday. He had asked the doctors if he would ever be able to run again or even walk a normal gait. Isaiah was told he would be able to do all of the things he wanted to do with the amputation of his leg, his life would be better, no more surgeries, hospital stays and he could work on his dream of one day running again. Isaiah told the doctors he couldn't even remember what that looked like as he hadn't ran since he was 6 years old prior to the injury. This all sounded wonderful to Isaiah. He was excited to get his leg amputated for this was the answer he had been looking for. 8/2012 Isaiah was able to go on a trip to Florida right before his surgery. He wanted to be able to stick both feet in the sand was his dream prior to losing his left one . The dream factory was able to make that happen for him. He was in pain though and although he loved the ocean he was looking forward to his surgery he was going to have when he returned to KC. Isaiah went in for surgery the day after his 15th birthday. Isaiah had severe complications that were not expected following surgery including severe pain and convulsions the doctors in KC were not able to manage or even slightly control. Isaiah was transferred across the US to Boston Children's hospital. There he received exceptional care. They are not just among the best for no reason. It's not the fanciest hospital not even as nice as the children's hospital here but the care and compassion and expertise he received was something he will never forget. They not only said they cared but they showed him that. Unfortunately Isaiah has received very poor care while here in KC . Boston was able to manage his pain and spasms and he never had another one for a year. In September of 2013 his pain and convulsions started again which again required a 7 day hospital stay and in the ICU with very poor care in place. The doctors here in KC couldn't understand his pain therefore did a very poor job of treating it. He was told it was anxiety driven and he needed to relax and control his pain better and some doctors even said it was in his head. No testing was done or anything he was sent home. In dec of 2013 Isaiah developed a large painful mass under his arm once again back in the hospital. When he was admitted to the hospital his pain was in his arm only but after days of no pain control and medications being held he needed he then started convulsing again in the leg . Isaiah spent two weeks in the hospital between Children's mercy and KU. Isaiah was told to "suck it up" by doctors and cope with his pain better and that he had pain that wasn't even real. He was discharged with no answers other than what one doctor told him that something was really wrong . After the strong advice of a hospital out of state it was recommended to get a pet scan to check for this cancer. Not by the two hospitals who treated him here as they claimed he was fine and said he needed to go home to move on with his life. Isaiah had the pet scan and a few days later a dr from KU called his primary dr and said there was an area of concern but he still felt Isaiah was just fine and not to worry. Which a few days later was not the case at all. There was big reason to worry and had been the whole time. Isaiah's pain was real and the doctors in KC who treated him the way they did should be ashamed. Cancer is real and cancer does hurt. Isaiah's story is a long one but we encourage you to advocate for your family as Isaiah's mom and friends have for him. Sometimes it is the only voice people have and only hope. Isaiah's cancer cannot be treated here in KC he needs to be in w sarcoma center. He will be going to MD Anderson in Houston next week . The doctor he will be seeing specializes in this cancer. Team Isaiah appreciated all your support. Although his travels this far have been rough he now has doctors and experts who believe and care and will work at getting Isaiah the best care he deserves. That is a promise that have given. Help us to support Isaiah through this. Go team Isaiah !!
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