Monday, May 20, 2013

Laying Low for a couple days

Good Evening,

The CMV results are back and we are super pleased to report that the CMV is detectable but not quantifiable (zero) - This is exciting news and just what we were hoping for. Unfortunately, we are not going home quite as soon as we would have hoped. That's okay though, third time's a charm!

Dr. Connelly is covering all of the bases in regards to Xander's GI issues. He went NPO at 11am this morning and will stay that way through tomorrow morning. We will see if the diarrhea stops (so far, it has lessened a lot). The goal is to isolate the GI issues as a bug or as GVHD. If he shows significant improvement by tomorrow morning, then we will allow him to drink some water and see how that goes. Otherwise, if the diarrhea persists, they will take him in for an upper and lower intestinal biopsies on Wednesday to determine whether it is GVHD or not. Aaron and I speculate that the gut issues are related to the oral steroid that he was switched to, but this is just our parental feeling. We will see where it goes over the next 24 hours or so.

My boys

These types of symptoms are all part of what we have to work through over the next year as his immune system changes and develops. There will be many more stomach bugs, I'm sure, and each one will probably bring with it a trip into the hospital. At least for this one, we were already here! A big bonus (which I think Aaron mentioned a while ago) is that while we are still inpatient now, we are considered ACTIVE BMT: this means SPECIAL treatment and SPECIAL nurses. Xander likes special treatment and special nurses :-)

Please send Xander lots of loving thoughts and prayers over the next 24 hours, he will need all of that love and energy to nip this one in the bud!

Peace and Love to all of Xander's followers,



  1. Hi Xander,
    We are sending our love, thoughts and prayers your way. You are super strong! Hope to see you soon.
    Love, CC, Sofi, Janice and Dilip

  2. lots of love coming your way!! so glad to hear the CMV results - you are a champ!! I know you'll get through this one with flying colors...keep your eye on the prize! :)


    Laura, Dale, Wilder and Corbin

  3. Hey there Xander,

    Tons of love comin' at you from the Lowensteins! We are so sorry that you are feeling so yucko with all of the GI stuff. It is such a bummer that you have to feel that way and we hope you feel better soon. On the other hand, we are super psyched that your big picture is looking so good! Great blood counts! The CMV results that we all prayed for! You are the strongest kid ever! Forget that, you are the strongest person, of any age, ever!

    As for you Emilie and Aaron, I would never put a *just* and "parental feeling" together when it comes to you 2. Your parental feelings and your intuition along with your knowledge are amazing and totally trustworthy. You two are the best guides Xander could have on this journey.

    We love you all!

    Margo and family