Thanksgiving :-)

Ha Ha Ha...I have to laugh today. I think Jeremie is doing better! He is sitting up and speaking to me and looking at me with his "angry face". He is soooo loaded on Dilaudid it isn't funny. His throat hurts...he wants pain meds...his head hurts...he wants pain meds....he doesn't even know what he is asking for! I don't think he can comprehend the conversation we are having!

I think he is having rebound headaches from the hourly Dilaudid, then asking for more pain meds! Then he complains of nausea and is demanding more Zofran. Zofran hasn't done anything for him in the 5 months we have been going through this. But I think this is all his brain can remember right now. I asked him if he could ask for Ativan, when his head hurts next time, and take it easy on the pain meds. Slowly I think we can get him back to earth ;-)

I like DRMC for a couple of reasons. I know the charge nurse...she is one of my most favorite people on this earth. I had the pleasure of working with her when I worked in Mesquite. She is an incredible nurse, and lovely person. I like that it is close to home. Much easier on me...after all this is about me ;-)
What I don't love is that Leukemia is not their specialty. They don't have the working knowledge of this disease process.  So giving Jeremie hourly Dilaudid is sweet, but I need him coherent. I want to see how much progress we are really making. PLUS it makes him a bit nuts. For their own sake, they need to chill on it. Second Zofran sucks. It just doesn't work. LDS gives it just for fun, they give it just to try it out. But quickly move to other methods without waiting for Jeremie to give directions on what might work. And right now, he can't remember the names or words of medications that work for his pain or nausea. Third, they have no idea how high risk Leukemia is. How quickly this changes, what this looks like on a patient, and what they could anticipate with a patient like this. And that sucks. Of course I use to be part of this mentality...and still wish I didn't know or anticipate how this process was going to go.

Jeremie wasn't able to have the lumbar puncture yesterday due to his platelet levels. They need to be around 75,000 to do the lumbar puncture. They got them to 45,000 and ran out of irradiated platelets. Again the danger of being in Southern Utah. It is like they are giving us a lesson in why we don't want to be here. He isn't in immediate danger, but it puts a damper on moving forward with his treatments.

Jeremie has been having fevers (called neutropenic fevers). His blood is cultured after these fevers to see what grows out. So far it has been nothing. The body will produce fevers if the neutrophils fall below normal. While he is having these fevers he is being treated with high dose I.V. antibiotics to help prevent minor/major infections. He has to stay in the hospital until his neutrophil count is above 500. Right now they are at 100. Not to bad considering it was Tuesday when they went to zero and by Wednesday they decided to start growing back. Much faster this time :-) Woo Hoo!!!

I know he doesn't think so. But he really is doing much better. He is sitting up, drinking, taking his medication. Having long conversations with me. I see a 100% improvement. Aaaahhh I'm so thankful to him. I sure adore this man. I go a couple of days without the ability to talk to him and I feel so lost! He is my constant check point for my ok-ness. Am I being a good mom? Do you want me to do this? My day sucked...what do you think? Should I grow out my hair? Do I look fatter today? How should I put these things on the table? Seriously...I don't know how I'm able to do anything ;-)

I think I was ok when he was first diagnosed. I was there with him. I saw him go through the first induction. I was able to talk to him, get feedback and see him progress through these last few months. Even if he was miserable. I could talk to him. We could see the next hurdle, hold hands and jump.

After the last hurdle of tumors, leukemia in the CNS, bone-marrow transplant...was still ok. Still could see how we could jump holding hands. Giving and receiving feedback from each other. The last visit to Salt Lake. He couldn't hold my hand to jump over the hurdle. It hurt him. He couldn't talk or make eye contact with me. He just hurt, and seemed to be disappearing.

That is when it faded...my being ok. My strength, my determination, my energy. I couldn't do it. I didn't know this lost, sad and lonely empty feeling. I didn't know if I was going to be able to check myself out of this. For the first time, someone said "are you ok?". Nope, nope I'm not ok. I don't know how to make it ok, and it just isn't ok. It took 5 months. I really don't think I was in denial. I just was looking in Jeremie's face everyday. I was able to talk to him. I could hear and see he was doing this and going to beat it. When I didn't have it, his words or eyes.., it all, every single word, possibility and fear came screaming into my head.  That wasn't very nice.

Maybe that is why I see an improvement. Maybe Jeremie doesn't "feel" the improvement, but I do :-)