Thursday, April 18, 2013

Positive momentum

Good Evening,

I am reaching out for all things positive right now, from billboards to bumper stickers, and from great friends to thoughtful reads. I am working very hard to be in the moment and make the people around me feel good, all while processing very difficult emotions that are hard to describe in words. I realize the transformation of our lives is happening when there is outstanding work to be done, but there are no work hours available in the day....

We started at 7:30 this morning with phlebotomy. Xander actually looked forward to it this time, because, well of course, he has lines now - NO MORE POKES. READ MY LIPS, NO MORE POKES! (at least for now) This has changed his whole demeanor and has put him in good spirits entering the final laps before transplant.

Next we met with Dr. Connelly and Chastity and had a productive meeting about the transplant and the supplements that he will receive and other details pertinent to Xander's care. All of the staff at UofM are doing a wonderful job moving the process forward - thank you to everyone that has stepped up to help, even if just it is to make Xander more comfortable during tests like these

Break before the storm hit
Abdominal Ultrasound

We were thankful to get a short break outside to fly an airplane and enjoy the breeze this afternoon. Xander really wanted LeDog for lunch (his absolute favorite soup comes from here), so we enjoyed that - yum!

Battle at Transfusion Clinic

Xander's hemoglobin had fallen to 7.3, although he was not looking nearly as grey as he usually does below 8.0. Thank you to all of the transfusion nurses, you have been very helpful and kind during all of Xander's pokes (especially Susie). Today, Susie wanted to make sure that Xander knew how to belch the A-B-C's. That made us laugh, and of course he was able to perform that huge undertaking for her right then and there. At least he said "excuse me" 26 times after.

This was probably the hardest part for me... watching him sign on the dotted line. He was very sweet with Mandy and asked her if on this line he was supposed to sign the cursive name or the printed name?

The Official BMT Signing

We found out today that Xander's Melphalan dose is so strong that it will only take ONE, 2-hour infusion to have a complete myeloablative response in his bone marrow. ugh.

Peace and love to all of Xander's followers,



  1. I am thinking and praying for you all!

    ----Freda Alley
    (a friend of Mary Jackson in Pinehurst, NC)

    1. Ms. Freda,

      Thank you for your warm thoughts and prayers.

      Xander still uses the quilt that you made for him on his bed everyday.



  2. Thank you Emilie for keeping all of us updated. My thoughts and prayers are with Xander, the family and his caregivers.

  3. Thinking of you all, and wishing and praying.....David Tamulevich