Long Haul......

Sorry I didn't post yesterday but I am still trying to figure everything out. Yesterday we were told after lunch by Patel that he wanted to do a CT scan while we were here to see where we are. The next thing I knew they were in to put an IV in his hand for the contrast for the CT scan. Then they were here to take us. I had to say hang on now, he won't sit still for this CT scan and last time the benadryl didn't' work and we had to go to an anti anxiety drug. So they had to call Patel and get it ordered. It works pretty fast so he was in his happy place. During the CT scan they told me that the contrast upsets the kids stomachs. I guess we don't remember this because usually he is sedated. So yes he did spit up some or shall I say quit a bit. It was mostly mucus and sour milk (yuck). When we got back to the room they took out his IV and he played with his toys but was really out of it from the medicine. When one of his antibiotics was finished they flushed the line and it made Austin throw up some more. So we got him some Zofran and cleaned him all up. needless to say I didn't sleep much. I worried all night long and I had a knot in the pit of my stomach telling me that there just isn't going to be what we want to hear. I talked to Austin's nurse last night and just broke down crying. I told her sorry I just have a lot on my plate and watching him not feel good just makes my heart ache. We had a long talk and she reminded me of how this is a rollercoaster ride. The ups and downs. We have seen some downs (little dips) but right now he is stuck in a big dip. Like the rollercoaster car needs some TLC to make it back up to the next hump. We have been so lucky in the past to only have a few short dips but now we are hitting some major downs. We will eventually get back up it will just take time.

Patel came in a 8 am. I could already tell when he walked in the room they we didn't get the answer we wanted. He said the tumor behind the eye is okay. The one in the chest has shrunk 12%. There are no new lesions. No infection or fluid in the lungs. But it just isn't where we hoped it could be. He doesn't think we will get the response we need to have the transplant. He is going to have the surgeons look at the scans to see if surgery could be an option. He said as of right now the only option is still chemo. He talked about changing up the chemo and doing three more rounds.He said we also need to sit down and talk about everything. That right there in itself scares me. We have not really had to do that. His red cells took a major drop from 10 to 8.8 and he didn't think that was right so he was having them redraw blood for counts. His platelets hit rock bottom with 12. So he is getting platelets here in a few minutes. Haven't gotten back the results on the red cell count but platelets came back the same. They have now put Austin on pain meds every four hours to help him heal. With his counts down low and the sores in his mouth can't heal by themselves. So to keep him comfortable and to keep ahead of the pain, scheduled pain meds is the way to go. We also found out that the medicine they give him to increase his white cell count can cause bone pain because of the bone marrow trying to make new cells. So this could be some of his irritableness.

We ask that we have no new visitors right now. With his counts so low and some many things going around out there it is safer to keep people away from him. He feels so crummy right now that he really doesn't want people around him. He is comfortable now sleeping with his blankie and his new teddy bear.

We are hoping Patel can find us some options other then just chemo. Please pray that there is an option out there for Austin. I myself is trying to research on what to do next. One of my questions to Patel in our talk will be "is this the place we need to be?"

Elizabeth