Wednesday, May 27, 2009

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)


  1. Sorry to hear this, Kristi. Hoping everything will get resolved quickly. I'll say a prayer tonight.

  2. Thoughts and Prayers - check.

    Sucks - check.

    Normal - check.

    What I mean is that for your three kids, this is a normal part of Max's life and your (you, Matt, and other caregivers) role in Max's life. A little later, they'll probably realize what a stretch this has been, and what you've done for them (all of them), and how (well) perhaps it is not every family's normal, but it is your family's normal.

    Maybe, just maybe, you're at Mile 23 in your marathon. The place where you're really, really tired and it'd be good to sit and rest a bit. But with a little more self-pushing, you'll get to Mile 24, then 25 . . . then 26.2.

    Focus on yourself a bit (if Mom ain't happy. . . ), focus on your breathing, and keep listening for your own gait as you near Mile 24. Imagine all of us on the edge of the road rooting you all on.

    Persevere - check.

  3. Kristi,Matt,MAX,Alex & Ellee,

    Thinking of you everyday...knowing you will be home again SOON...
    Carolynn & Bob

  4. Sending you a huge hug...I can only imagine how going back to the hospital after things have been so well would feel. Even though you expected it, mentally and physically your mind and body don't want to do it! From a couple of experiences I have had, sometimes getting through the hard part is more "do-able"..but the follow up is sometimes harder and can bring spirits down hard....hopefully everything gets figured out soon and Max gets home quick....I am glad the doctors are on top of it and you are in a good place. - Amanda

    Tell Max his friends in Michigan will send photos of the blood drive we are having in his honor Tuesday! Everyone is amazed at how strong he is and are in awe of everything he has been through.

  5. I'm so sorry to hear this! We'll say extra prayers. I left a picture CD on your door today - they aren't fabulous pix, but there are some cute action shots. I love the first one - Max is a blur! Hope the kids enjoy seeing them.

  6. I'm so sorry to hear this news! We will pray for a quick resolution, and hope that it is something that is easily fixable. We will look for updates...


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