Don't waste my time.....

We didn't have chemo until 11 am today. So it was nice to sleep in. Yesterday while we were gone Traci from Methodist Hospital called. She is the transplant coordinator. She was calling to set up a time for this week to talk to Dr. Grimley about Austin's transplant. I was really shocked to be honest with you. We haven't heard about his transplant from Grimley since the day after he relapsed. I take it and look at it as a positive thing. I felt before that since we never heard from Grimley transplant would never happen. I called her back to let her know that we were only doing chemo on Wednesday and not sure when we will start radiation. She called me back at 8:24 this morning to see if we could come to the clinic to talk to Grimley after treatment. I said yes. She said she would tell him we would be there between 2 and 3. So I called Jason to see if he could get off to come. He wasn't sure but I really wanted him there. Last time it seemed Grimley wasn't very happy that I didn't have Jason there too to discuss transplant. Too I wanted Jason to be there so he could here it all from the horses mouth too. So Jason was able to get the time off. He met us down at the central Market place so we could fast grab lunch. We went up the clinic where our meeting was taking place. When we walked in the door Traci said," Did you not get my message?" I told her no. She said she called Patel's office at 11 and for this staff member to let us know that the appointment was cancelled for today. I said nope she never said a word to us. Jason was very upset. It seems that every time he attempts to come talk to the doctor's they are always not around. Strange. So Traci was trying to reschedule for another time. I told her that I really couldn't give a time due to I never know when radiation will be. Jason told her that he couldn't take off work again. So she is to talk to Grimley about setting up some kind of meeting before or after Jason's work. Don't see it happening. The guy isn't on my favorite list and he surely didn't make it today. I feel my time is precious and I don't like to me messed around with. The little free time we get to spend is valuable to us. So we will see what they come up with.

At Patel's office it was and interesting day. They had an emergency in the office. One of their patients had and allergic reaction to her chemo. To the point where they couldn't wake her up and had to call 911. At the time this was happening I don't think Patel was around. We think he was over at the hospital. When he did hear him in the room we could hear him tell the little girl, "breath, take a deep breath". My heart dropped. I started praying. Later Patel stuck his head in our room to tell us that things were okay next door. I guess he knew we could hear what was going on. I heard Patel at one time tell one of the staff to cancel the EMS. But shortly after that they arrived. I heard the mom on her cell phone tell someone she was okay. The were going to get her stable and then take her over to the hospital. The nurse told us that this was not the first time this has happened to her. The last time they gave her this chemo she did it. This time they gave her premeds and it didn't help. This child needs this chemo. I am praying that God helps Patel find another option for her. I was scared and it wasn't even my child. Austin was asleep in my arms at the time. I kept kissing his sweet bald head and just loving he was with me.

So far we only have chemo at 10:30 tomorrow. No other appointments at this time. We hope to start radiation Friday but for sure we should start Monday. We talked to Patel this morning. He asked me all that Dr. Eng told me and I told him. He felt that when you get any kind of radiation some go to the whole body. He is hoping that the whole body radiation will take care of the rest. He said maybe after treatment if some is still there then they can radiate. We will see. We talked about how during the two and half weeks of radiation treatment Austin will be in the hospital (as what always happens, fever) so they will just transport him by ambulance to CTRC. He did say Austin's eye looks beautiful. We think so too. It started to look good after surgery.

His counts are: white blood count 1.9, Gran. (ANC) .9 (neutopenic is .5 so we are close to being in that zone), red blood cells were 10.3, Platelets went up to 78!!