Daniel is not feeling so good today and actually took my suggestion for a change and just crawled back into bed to go back to slee, instead of trying to fight the exhaustion all day. For the first time since I remember he actually said this morning that he really didn’t feel good at all. Yesterday at the hospital when we were walking between different appointments and we were kind of rushing because one appointment ran late before his scheduled clinic, he actually asked me to slow down and he had to lean on me for support. It is really heartbreaking. He is supposed to be getting better at this point. Technically he is and the professionals are trying to tell me that he really is. This is exactly where he is supposed to be and everything he is supposed to be experiencing and feeling right now is typical. Perspective, perspective, perspective. I am hitting another tough spot again, I guess with his birthday coming up tomorrow. This is my reflection space so it is my space to share. I am being pouty. I think more for him than me. He is being so good about it to the point it is killing me. His New Year’s resolution was to tell me something he wants to eat everyday so that I can help him get better without me going crazy trying to come up with something that he really doesn’t want even with all his restrictions, and he is almost whimpering naming things because he has no appetite a doesn’t feel like a single thing. I make him anything he asks for and he doesn’t eat it. Have you ever been that sick that you don’t want anything. And remember, this is a kid that loves all food. Yesterday, his special BMT nurse lifted some food restrictions and you would have thought he would have been the happiest kid in the world and he teared up, because he doesn’t even want them anymore. Sadly enough, yesterday was Monday and he didn’t even do his radio show. He is that down. I asked him a few times now what he wants for his birthday and he just says nothing or he says he wants to sleep. The one thing I wanted to give him was the sushi for dinner but that hasn’t worked out and even if it would have he probably would have just been upset because he can’t really eat it right now anyway. I know it will all come back and he knows it too. It just all seems so far away again. I am a so sick of saying poor baby. I don’t want him to be so stubborn and I want him to buck up and eat a little soup I made, but then again how can I force him to do that if I know he knows he is going to throw it up. But then how can I expect him to have energy and stay awake if he doesn’t try to eat. It really is a vicious circle and I am mad at him for giving up to the fact that last night he said he knows he is going to end up back in the hospital and getting an NG tube because he can’t eat. Our only hope here is maybe that we get some good test results back in a few days and we can stop IV fluids at night that will help him rest better at night that will get him more rested that will help heal the cycle a bit to help the exhaustion. Then Friday will be DAY 56 and on that day for some reason we stop one of his antisuppresant drugs. The nurse says that this may help with some of the nausea a bit so there is a bright light. Here is hoping for that. That takes 4 huge pills out of our day at least. This increases the chance of Graft Versus Host Disease arising but they do not think this is likely since they have not seen any signs of this yet. This just reminds me it is day by day and we just take it as it comes and if this is how it goes then so be it. I am making the dinner he requested (that he probably won’t touch) and at least Matthew will eat it (Booboos meatballs and rice). Grandfather Moish is going to pick up some ingredients I can’t get out to get since I don’t want to leave Daniel sleeping and Matthew is back at school as of today so we will be back to a tougher schedule and are now back to three a week appointments at the hospital but again, happier to be home, right?