my son christopher wiggins was born April 12th 2002. at 30 weeks. I at the time was serving in the Navy and was very young. He was flown to baltimore childrens hospital after both lungs collasped and grade four bleeds on his brain. After staying there 2 months was finally discharged and ready to go home. For months chris would have complications at which i thought was due to him being a premie but shortly after his second birthday, when chris suddenly collapsed and was very ill on sept 28th 2004. i rushed him to the hospital not knowing what was happening. besides that time i had taken him over 17 times and every time i was told i was over reacting. but that time my heart told me to beg this ER doctor for a scan of his head. To this day I can only say that it was God. After doing the scan the ER became very busy and i didnt understand what was happening. Everyone came to check on me and my son, asking did we need anything and shut the door. What was going on? i thought the CDC came in on another patient, after a few minutes the same doctor that kept turning me away earlier in the summer came in and told me that my son was dying. That a large tumor was there blocking fluid on his brain and he woould not make it if he didnt have emergancy surgery. What? i didnt know to cry breathe fall apart, I couldnt cry so I called my in-laws and she prayed with me. Right away my ex husband was in his way to be by my side. my friends Tanya and Stephanie were there to assist with my other two children. Stephanie who i had only known a matter of months drove to be with me during the long 13 hour plus surgery. When chris came out of surgery he was finally able to speak, walk right, and his first words at two and half was Marcus, i want some chocolate milk. we went through chemo and radiation from 2004-2006, after all the treatments i thought we were in remission. but during his treatments i started seeing things that i had not seen in other children with this disease. I was concerned but told by some not to worry about it, it was normal. For years i knew that something was wrong, something was off. One late night up with my oldest, i decided to google my son has holes in his hands and feet with medulloblastoma and up pops this name Gorlin Syndrome. i called the doctors the next morning and asked could i bring this literature because i think i found what was behind all these years of illness and cancer. As usual it wasnt taken seriously until this march, the first year in six I finally was brave about going to his yearly appointments, I thought we beat cancer, but then the doctor came in and told us that i could be right, but chris had large tumors in his face that eroded his facial bone and i needed to get them out. On june 7th 2013 chris had them taken out. along with with several teeth. but he also had to get a new jaw bone. we thought that we would have been here in st. louis a matter of weeks, but since june we have not left. we have confirmed through testing that Chris does have Gorlin syndrome. Its a syndrome that is missing the tumor suppressor gene. not only can he develope different cancers over his lifetime, this disease also causes other malformations and things to his body in which we have already started seeing. right now we are treating his skin cancer, and trying to find out the status of the lesions in his arms and legs and the treatment plan. Many have told me that i have done a great job and im strong, but they dont know that my heart is breaking and even though I finally found out what was the cause, I didnt want to find my worst nightmare. A disease that there are little knowledge on. Many doctors have never even heard of it. It is a rare genetic disease that there of course is no cure, all we can do is handle each type of cancer he gets and the others illnesses as they come along. i want to spread awareness to this disease because one problem we had with the doctors was that my son is african american and the disease is basal cell carcinoma nevus syndrome. another name. many didnt see a AA child getting skin cancer. share my page. Im hoping to reach others and hope that i can find peace that maybe someone can help me get through this and also maybe i may help someone.
Posted on: Tue, 08 Oct 2013 05:26:45 +0000
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