Day +56: Not Where We Want To Be

It's day +56 and overall it's been a bummer of a day! Max was up during the night with a slight fever and nausea and when he woke this morning, his fever was up over 100.5 degrees. We called down to the hospital and they told us to head down so that they could fully check Maxer out. We spent almost 7 hours in a private room in the emergency room (yuck) and then were finally admitted and taken up to the fifth floor (our old stomping ground). So far today they have not determined what has caused the fever for Max. They have drawn a bunch of blood cultures to check for any signs of viral or bacterial infection and should know more tomorrow.

The only thing that we know for sure right now is that Max's ANC (his infection fighting white cell count) is WAY down. It is at 30 when at one point it had been up as high as 6,000 post transplant. It should be at least 1,500 and was holding at about the 2,000 - 3,000 range for a few weeks. But, as we reported in our last blog, it had fallen down over the last week to a critically low level again. As of last Friday, in an effort to increase the ANC, they stopped one of his anti-viral medicines and gave him a dose of GCSF which is supposed to help boost white cell production. However, after another dose of GCSF today, the white count has still not recovered. So, we also have to figure this out while we are here. They are going to continue the GCSF for the next few days to see what happens and if the counts still don't recover or another cause isn't found (ie viral or bacterial infection), we will have to do some more testing. That part gets a bit scary and unknown to us right now...they have just mentioned a few things about the possibility of white cell antibodies or graft rejection. For now, I am holding onto the hope that the white counts are down from some other cause...either the gancyclovir still or some infection.

Anyhow, this is NOT where we want to be. It has been extremely difficult for me today. I just don't want to be separated from Alex and Ellee again, although I know we have to do what we have to do to get Max healed. It's just disheartening right now being here again and having these issues to deal with, along with being separated as a family again. As I've said to Max many times today, "this just sucks...but, we've gotta do it."

So, please keep your thoughts and prayers coming. We knew to expect to be re-admitted along the recovery path but, it doesn't make it any easier on any of us. We were so enjoying being home together and even a minute apart like this again is tough for all of us. We appreciate all your positive vibes and prayers and know that they will make the difference in getting us all back together as soon as possible.

More as we know it.

Peace and love,
Kristi (and Matt, Max, Alex and Ellee)