Blog

Jun
05
I just want to know what happened to Ayden

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Many people wonder why I just acnt move on from Ayden's death. I have every intention on moving on with my life the best way I know how, but as a mother, as Ayden's Mother, I cant just accept Cancer killed him. Does this mean I am accusing anyone of anything, no! It means that I as his mother would like to know how his disease progressed. I have many questions about his treatment that have gone unanwsered. See, what people dont know unless they experience something like this is how the process actually works. When i would get an appointment for Ayden, we would wait in the waiting room for about a hour before he would get called back. Once we were called back we would go in and see the nurse and check his weight and talk about medications he may have had throughout the week. Any questions I have about medication or treatment at tthat time, are referred to his doctor that we will soon see. So once that is over, we walk back into his room where we wait again and the nurse begins accessing them and taking their blood. We then wait for the results of his blood counts and when those are finally in, we get about 2 mins with his doctor. His doctor will run into the room, look at his counts schedule him for another chemo and then tels you he will see you next week. The most information given to me as his mother is, we are monitoring the tumors, scans will be set up soon, but when those scans are taken, its like finding Waldo to get the doctors to show them to you and explain them to you. They give you two minutes and they are on to the next room. So this is where my anger comes from. I was the mother who asked questions, who researched, who offered solutions, but they discounted everything I did and said and made their own decisions on how to treat my son. Life changing choices in wwhich costed my son his life. So as a mother I feel Science, Medicine, and Research falied my son. Through out his whole treatment, not one time did St. Jude or anywhere else have a Rhabdomyosarcoma study. So please hear me clear, I am not saying these places dont do great work, but I am saying there is a huge Gap in research. How can Rhabdomyosarcoma be one of the only Childhood Cancer and it has been for 30 years, and not have one medication targeted to treat just this disease in a child. How can we fix this? How does St Jude approval what trails will open up? How can we get more beds at St. Jude so they can help more children? These are the questions that should come of Ayden's journey. I am a mother who desperatly loves her little boy. Ayden brought me unimaginable joy and completnes, so I have to understand why this happened. I have to use Ayden's journey to bring change for the next mother who will be fighting for her childs life. I have no intentions on hurting anyone or blaming anyone, I just want something to change, something good to come to families going through this. Loosing Ayden has took a piece of my soul I will never be able to replace, but Ayden knew I would struggle which is whyI know he left me the foundation, so keep him alive in my heart. By me understanding this disease and knowing how it progressed I can then begin to heal and accept what has happened. But for a mother to have so many unanwsered questions when I followed the doctors s faithfull and supported them so strongly, I feel i am owed every second of explanation.


 

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