Daniel isn't feeling so great today and we had to ask his teacher to leave after 30 minutes. He was nauseous and not feeling great and went back to bed. I am watching him like a hawk. Maybe a little more than I normally do on any other given day and I have one hand on the phone to our special BMT nurse that can have him come back to the hoospital at anytime. I guess that is maybe why I am never 100% settled and comfortable anymore. I guess I just always am thinking we may need to go back at anytime. I of course never want that, but in the back of my mind have an unsettling feeling that we are never home to stay. It is a terrible uneasy feeling I wish I could get rid of. It is terrible to feel both stuck in your home but also at the same time that you can be ripped from it unexpectedly at anytime. Geez when you say it like that it sounds like such an unsettling nightmare. Hmmm, I guess that is what this still all is. It isn't over yet, I know most of the hard stuff is and we need to move on from it but there are ruts we keep tripping over. I hope a little afternoon nap will help him feel better and an easy afternoon will move us to a better day tomorrow. All good results say no reason it shouldn't. Now if the weather would just cooperate, maybe we could get outside for some sunshine.
Preliminary results of the latest bone marrow biopsy show that once again Daniel has NO EVIDENCE OF MALIGNANCY. This means there was no detection of leukemia cells in his bone marrow. Also his CMV continues to drop and last night it is at a level of 7,309. Remember we are trying to get under 1,000 so all and all we are looking good. We have switched up meds once again and although the antiviral seems to be working on his CMV slowly but surely, it is also kicking his ANC's butt and Daniel is in need of a more frequent boost now. Doctors say this is expected and Daniel is kind of feeling the effects of it all catching up right now. This as well as some major physical activity at a mock combine on Monday at the Seacrest studio and today he is feeling the hurt. Daniel hasn't been physically active in a long while and this probably put him over the edge. He and I both are aching as I slipped and fell on some ice while BBQing Monday night. We are like a bunch of old Grannies sharing the heating pad and nursing our aching bones and certainly the cold weather isn't helping. But at least we are at home in our own home cuddled up for comfort.
Daniel isn't feeling so great today and we had to ask his teacher to leave after 30 minutes. He was nauseous and not feeling great and went back to bed. I am watching him like a hawk. Maybe a little more than I normally do on any other given day and I have one hand on the phone to our special BMT nurse that can have him come back to the hoospital at anytime. I guess that is maybe why I am never 100% settled and comfortable anymore. I guess I just always am thinking we may need to go back at anytime. I of course never want that, but in the back of my mind have an unsettling feeling that we are never home to stay. It is a terrible uneasy feeling I wish I could get rid of. It is terrible to feel both stuck in your home but also at the same time that you can be ripped from it unexpectedly at anytime. Geez when you say it like that it sounds like such an unsettling nightmare. Hmmm, I guess that is what this still all is. It isn't over yet, I know most of the hard stuff is and we need to move on from it but there are ruts we keep tripping over. I hope a little afternoon nap will help him feel better and an easy afternoon will move us to a better day tomorrow. All good results say no reason it shouldn't. Now if the weather would just cooperate, maybe we could get outside for some sunshine.
1 Comment
Ann Marie
3/5/2015 08:37:05 am
Just heard the good news from you directly and I am so proud of you and your family! Daniel is one lucky guy and you are an amazing mother! We are honored to be such good friends with your family and look forward to many more amazing accomplishments!
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