Oh it wasn't a dream...

Thank you all for the prayers. Please keep sending them up! They have done wonders in the past. Sleep wasn't totally possible last night. When I found out all I wanted to do was come home and crawl into bed and sleep and then when I could I tossed and turned and would wake up every hour and lie there and think. Think about the weekly visits and the stays for fevers. About the possibility of a transplant and how scary that is. And the doctor told me yesterday that his best chance is a full sibling which we don't have. We were planning on doing that next summer. I have tried not to cry to much because I don't want to scare him. But it is so hard and it is building this giant knot in my stomach. I explained everything to Cheyenne. And she is scared as well. But I vowed to be honest with her because she always worried before when other things have happened and people didn't give her the full story. She is being a great big sister! Dave took her to school and Donavynn wanted to go, but he had other stops to make so he had to stay here with me. And Cheyenne let him play with her Nintendo DS, boy did that perk him up! He slept good last night. The best he has in a couple weeks I think because for some reason he wasn't congested last night like he has been and is now. He's having some mild roid rage already because we were instructed to continue his medications as usual until we know more. My heart breaks to look at him. To see how happy he is and know that that is all going to change and he is going to feel like crap again. He was just starting to have a normal life and now we have to pull him out of school and keep him sheltered again. In all that was going on yesterday I forgot to mention that his appointment with ENT went well. With all the sinus drainage he has had for the last 2 weeks he has a mild ear infection in the right ear. Which is good, before he would have had a raging ear infection in both ears. So he is on ear drops for the next week. I did some research last night and found the protocol that Nancy told me about yesterday and that made me feel a little better. But they can only use that if it is only in his CSF, I believe. So we are praying that his marrow is clean! The protocol apparently has a 70% success rate, which isn't as good as the 80% he had before but it is sure better than what I was thinking. Now that I know that I am going to try to stay away from the internet researching, it doesn't help usually. It only makes this knot bigger. I will try to get back to people as I have time. But right now I am just blogging to help me organize my thoughts and to give me a release because with all that is going on around me I feel like I am going to explode. In all of this my heart also breaks for Dave. He had trouble dealing with this the first time and he is a complete mess now. He didn't sleep at all last night. So if you could please say a prayer for him that he is able to find the strength and peace he needs to cope with this. Thanks to all who said their phone lines are open but honestly I don't really feel like talking right now. I don't know what to say or how to feel. I am numb. I am desperatly trying to channel the strength, courage and faith that Mackenzies mom had throughout their battle. But it is very difficult. I'm sure that in time it will come but right now all I see is that abyss I saw when we heard the news the first time, when you can't see beyond today. When the future is no longer bright and full of hope but scary and full of to many unanswered questions. I keep thinking this can't be real but in my heart I know it is. I'm gonna go now and help him play with the DS. Please keep the prayers coming and I'll post again when we have some more answers.