Tuesday, May 21, 2013

NPO - not exactly

Still NPO, but not exactly. We have the "you must drink this nasty salt water" docs overriding the "you must not drink anything" docs.

Xander will undergo multiple procedures tomorrow, all while under general anestesia. He will have a Esophagoscopy Gastroscopy and Colonoscopy. They will perform biopsies to test for GVHD and CMV. They want to verify that it is GVHD and rule out CMV. Many of those over 50-year olds out there can empathize with the drinking the nasty salt water "stuff."  Side note, we won't get these tests back for 3 days.

Unfortunately, we are in the "gut shutdown" mode, which means longer recovery. We will have to slowly start adding foods back in as soon as his diarrhea is gone completely (still could be another day or two) and wait for his reactions. There is basically a three day window for the GVHD of the gut. So reactions can take up to three days to present... sounds like a very delicate balancing act!

He's on TPN-Lipids now to assist his body in staying alive during this time without food. I am confident that we will be starting food back up VERY soon.

Because of the continued stool issue, Dr. Connelly is moving forward with GVHD treatment, which is Enebril (Enteracept), which is what he was on earlier with the skin that didn't respond (if only we had left him on it!!!!! - I know, that was a lot of exclamation points).

There is just no way in this field to predict what will happen and what child will have what reactions, and to boot, every child is different. Dr. Connelly has talked with us about when they sometimes have to try and INVOKE the body into these types of reactions to get the immune system to fight off the problematic cells (in our case, MDS). Whoever patents how to quantify the GVL effect is going to be a very important part of the future success of bone marrow transplant for curing these diseases.

We have a lot of woods left in front of us.

Peace and Love to all of Xander's followers,



  1. We are praying that tomorrow goes well and that the next few days bring some relief.

    So much love to you,


  2. Another hurdle, which I'm sure you will jump over with strength and grace. Sending positive thoughts your way.


  3. Oh dear! Just when we thought it was "safe to go back in the water, again!!!!" Xan Man, so sorry! You were doing so well and now this set back. Grandma and I are thinking about you all the time.



  4. We are all rooting for you Xander. Hope the GI problems leave you soon. Hugs from all of us!- Dave, Kelly, Liam, Wren, & Josie

  5. Sending warm thoughts and prayers your way today! I hope that all of these GI problems will subside soon. Thanks for the update!


  6. OY! That does not sound like fun at all...We're thinking of you all and sending love and healing your way!! Xander - hang in there, you're doing great!

    Let us know if you need anything...


    Laura, Dale, Wilder & Corbin

  7. Hello Xander,
    This is from Archer "Hey Xander how is it going? I hope I get to see you soon. If I can't I will keep sending messages, the whole class says "hi"! Love, Archer"

    We have been very sick lately so we have been staying away, not wanting to infect you with bad colds...but hopefully we can come over for a playdate soon.

    with love,