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2/28/2017 Latest post:
My journey started in August of 2013 at El Paso Children's Hospital. In August of 2013 I was diagnosed with Cushing's syndrome a condition that occurs from exposure to high cortisol levels for a long time. I was then airlifted to Texas Children's Hospital in Houston where I was diagnosed with a rare cancer called carcinoid cancer of my right lung the cancer appeared in the form of tumors. They scheduled me for surgery called a wedge section to remove the tumors. Before that happened I had to undergo emergency surgery for a perforated ulcer which is a serious complication from the cancer. Six days after that surgery I under went the lung surgery. I had to also received a blood transfusion due to blood loss. I was in PICU for four days with extremely high blood pressure which fortunately they were able to bring down. A few days later we received devastating news that I still had cushing's syndrome so they transferred me to the National Institute of Health where they discovered that I still had tumors in my right lung so they did a lower lobeectomy and lymphectomy on my right side. After that surgery we got good and bad news, the good news was i didn't have cushing's syndrome anymore and the bad news was a tumor was discovered in my lymph node meaning their is a possibility it spread and the cancer is such a slow growing cancer i will always be at risk of is occurring again for the rest of my life. I go to the National Institute of Health once a year so they can monitor me. I have been in remission ever since. In July of 2014 I started having unexplained nausea, vomiting, and reflex and after a endoscopy they diagnosed me with gastroparesis. In January of 2015 I started having unexplained weakness, paralysis, and nervous system problems and they said it was some type of autoimmune disease possibly caused by the carcinoid cancer. In June of 2015 I had a "relapse" of weakness, paralysis, and vision problems. In October of 2015 I had to get a feeding tube due to complications of the gastroparesis which unfortunately in the end I had to get a central line and be TPN dependent due to me not being able to hold down food. In 2016 I was hospitalized every month due to serious infections which turned into sepsis. In September of 2016 I was diagnosed with Mast Cell Activation Syndrome. As of today I don't need TPN anymore or a feeding tube but I still have problems eating and they are one step closer to having a diagnosis for me and I don't have a fully functioning immune system thus making me susceptible to illness so I have to wear a mask every wear, when I get sick my autoimmune disease progresses and I relapse and my symptoms get worse each and every time . This journey has been hard on me both physically and mentally, but i will keep on fighting and hold my head high.