Well we are back in our little prison call ICS. I hate the feeling I get when I first walk into our room. Its not a warm inviting feel, its a cold uneasy one. Skyler is so unpredictable so when we walk in, its with the knowledge that we will never know when our "sentence" will be over and we can go home. I hate the not knowing. I hate that I know now that just a one nighter can turn into months. I know this hospital like the back of my hand and I hate that I can say that. I cant believe we are still doing this almost a year into it. I was told after six months we would hit maintenance and our lives could resume some sort of "normalcy" Well our life has been anything but that and its been over 10 months. Its so hard to see kids that were diagnosed months after us now in maintenance. It all just seems unfair. Unfair that Skyler isnt able to enjoy this nice weather. I find myself crying alot more lately especially when I see other kids running around, riding bikes, going swimming, just being normal kids. It kills me that I cant give that to him. It kills me to see him lay on the couch all day so sick and telling me all the time he wished he wasnt sick and didnt have cancer. Today when I told him we were being admitted he started bawling and begging me to tell the doctors no. It broke my heart. Im sorry Im being kind of a downer but this is how I feel and Im so frustrated with everything right now. I need answers. I need the right medicine to make my son better.
Tomorrow Skyler is having a colonoscopy as well as an endoscopy, so they are going in from both ends. One possibility is that he has CMV thats hiding in his intestines, so they want to be able to look around, take biopsies and rule things out. If that comes back negative another real possibility is that its fungus again. We just cant tell for sure if there is some hiding out in his liver and kidneys. Nothing is growing in his blood but its still a possibility its in his organs. Also one of his levels came back elevated which leads us to believe that it could be fungus. They are retesting him to see if it went up again or not. The problem is that it takes about three days to get the results. So another waiting game begins. This just cant be happening again, I would be devastated if this is his fungal infection making him so sick again. It was this awful infection that almost took his life. Please please please keep him in your prayers. I am just so worried right now and Im so sad for him that he has to be put through this again.