Just...WOW

So as most of you guys know Connor never engrafted so he is currently going thru more chemo and will have another transplant on Monday. This week has been HELL plain and simple. He has been throwing up alot more, has gotten skinnier, and has gotten weaker in the last 2 days. His fever spiked at 104.4 today and stayed and 103.3 most of the day. The virus is gone and all the fever and stuff he is having now is from the Antibodies they are giving him to increase the chances of him engrafting. He is nauseated from the Chemo/Antibodies. He is wishing so bad that he was home. He has been talking alot about death and dying. It is killing me. I feel my heart tear a little bit everytime he mentions it. I have to let him talk openly about it though because it is something he is concerned about. I hope none of you ever have to hear your child tell you how they think they are dying. He told me last night that he wants to be a ghost when he dies so he can hide my glasses. I don't know how to answer him about this topic. So far I hold it together until I can get away from the room and then I just cry like a baby. I am so tired of hearing "Be Strong", "Keep The Faith", "God Has a Reason", "I Could Never Be As Strong As You", etc. I know that it is meant to be helpful but until you have been here watching your child getting thinner and appearing frailer by the day you have no right to tell me how I should Keep the freaking faith! While I am at it I quite frankly don't give a flying rat turd about God's reason either. What kind of reason can you come up with for a 9 year old child to be going thru hell and no one being able to tell him why he has to go thru it? I am not mad at you guys that tell me this stuff I am very glad that you are trying to be encouraging, but before you say things can you please think about how you would feel if you were watching your child go thru this. As far as me being strong...you have know idea how I fall apart when no one is around. I tell you everything is fine and that he is better. The reason I do this is because if I tell you the truth then you tell me for 20 minutes that I need to claim it and have faith! I love all of you guys, If you want to post you are praying, I am more than happy to hear it. If you want to post warm wishes and get well soons, that is great. What I want you guys to do more than anything is to just call and crack jokes and not even mention all this crap that is going on. Sometimes it is nice just to have that couple of moments where this can be pretend gone because no one is asking you every 5 minutes whats going on. If you want to know about Connor please call my Mom or Family to find out because I get tired of repeating it! If your child had a life threatening disease would you want to be reminded of it every 5 minutes when someone different called to ask how they were doing? Trust me it gets old. If I bring it up great, but if not please don't push. Please don't get offended I am just having a hard time dealing with never ending questioning and speeches. It is hard to keep the faith when you have all the facts in front of you. Remember we have been fighting this disease for almost 2 years! Doesn't sound like long until you really see what has happened in those 2 years countless hospitalizations, Chemo, chemo, chemo, radiation, 2 surgeries, hair loss, people staring, OH AND DID I MENTION PEOPLE STARING, septic shock, an ICU stay, Pneumonia, more Chemo, remission, relapse, allergic reaction, failed transplant, another transplant, another allergic reaction. Those are just the ones that came to mind right now that is not including everything else! I probably wouldn't even be saying anything but the week I have had has made it worse. My nerves are a wreck, I am worried to death about my son. I have to worry about if he is going to make it. I don't sleep (obviously I am on here writing this at 1 AM!). I want our lives back, I want Connor to be able to go to school, swim, and play with friends. If he catches a cold I want it to be not a big deal like it is for everyone else. I want him to have his normal life back. You see normal for me and Connor has changed. We will never be that carefree again. We will always have to worry. We will always have to take extra precautions. Our life has been totally changed. Please just keep that in mind the next time you see me. I love you guys and I don't want to hurt your feelings but I think it is better to tell you now so because I don't think I can hear anymore of this stuff. (((HUGS))), AMY