Notice anything different?

No oxygen! Sky has gone two days completely off oxygen (except for a couple hours at night when he was in a deep sleep)  It has been so great.  I still cant believe it because he has been on so much respiratory support since we have been here.  I think the part I love about it the most is that he is starting to look like himself again.  Well a balder version of himself. 

Another great thing that has happened is that he went 24 hours without a fever the other day and then yesterday he just had one low grade fever.  Yay!  It really is incredible because he has gone the last 4 months straight spiking at least up to 104 degrees F everyday and sometimes up to 105.  At first I just thought it was a fluke but he hasnt spiked at all today either.  Wow.  It really is hard for me to believe that he is starting to get better.  It seems that every time something gets a little better, we get slammed with something else.  So Im very cautious.  They are however, throwing around the "H" word (home)   I just cant believe that it may be getting to that point.  Everything he is on right now we can do from home, the only thing that has been keeping us here now are his fevers and his platelets.  But he has been going almost a couple days now in between transfusions, so we could come in every couple of days to get those.  All these things that are happening are just so amazing, but in the back of my mind I dont believe it.  I guess Im just waiting for that something that is going to slam us again.  It would be great to be home though.  I am getting soooo sick of this place!  I feel like everyone that comes in is bringing in nasty germs from other kids. I seriously want to either spray everyone down with Lysol when they come in or have them where bio hazard suits or something.  I would feel much better if we were in the comfort of our own home and I could control who comes in.

On Tuesday he is scheduled for a bone marrow aspirate to check for any cancer cells, and also a lumbar puncture so they can administer chemo into his spine.  And then depending on if his bili is low enough, they are going to consider starting a new chemo drug.  This is one that he should be on but hasnt been able to because of his liver.  But if his counts are in the normal range then they will probably give it to him and we will just have to cross our fingers and pray that it doesnt damage the liver.  It seems that most of these drugs are harmful to the liver.  Not a good thing when at one point his was almost shot.  At least now he can start getting the drugs that will keep the cancer away better, and that is the nasty thing that has caused all these problems in the first place.