Monday, May 27, 2013


Good Evening,

Xander is on the upswing in regards to energy level, food intake and overall spirit.

Every day we talk about counts, and we receive daily updates of the Hemoglobin, WBC, Platelets and ANC, among others. We continue to monitor his Liver and Enzymes daily. He gets glucose checks post TPN (means a poke). He has everything translated into a number. We are thankful that lowered counts has not been a major issue for Xander at this time (he did have some big drops, but has since recovered nicely).

As of tonight at 7pm:

Hemoglobin: 11.4
WBC: 18.9
Platelets: 95
Hematocrit: 33.2 (>30 for ECP, or needs transfusion)
ANC: 11.7
CMV: 1300 (up from 817, but not alarming)

Tomorrow, Xander's steroid dose will be reduced. Along with ECP, this will be the first step into removing some of the immune suppresents. We hope to keep Xander in the mode of continuing to lower the steroid doses. These have long-term health effects that we can hopefully avoid if he responds to the ECP. In addition, he has to move his TPN-Lipid schedule around so that it can be turned off at different times of the day. This is inconvenient, but will hopefully be short-term as he continues to eat more and more simple foods. However, let me tell you, that Zingerman's broth has been really great and just enough fat-protein to get him feeling a bit better every day.

You can see his enthusiasm here, as he eats yet another spoon of rice.

okay, I'm cleared on rice, let's move on
The whole eating situation has been nothing but a headache and heartache. He is so hungry, yet they say he can only have 32oz in one day, and rice, and just a couple other not so great items. He is getting frustrated and we are getting frustrated as he is doing so well and it is obvious that his stools and gut are cooperating. Mind like water. We'll get there, just a couple more days...

Changing it up again; Dr. Levine comes on tomorrow.

Peace and love to all of Xander's followers,



  1. We are so happy you are on the upswing! It sounds like the past few days have been really, really hard. We feel like yelling: "Let the kid eat!" But slow and steady is way to go...easy for us to say, I know.

    We are happy that your steriod dose will be reduced today, another step toward your goal, eyes on the prize!


    Jasmine and Margo

  2. Hi there,

    Jasmine and I were talking about "eyes on the prize" and we just listened to some youtube videos of the song. Here is the link to a really good one:

    if the link doesn't work it is listed under:

    Keep Your Eyes on the Prize (SNCC Freedom Singers, Chicago 2

    We love you guys!

    Margo and Jasmine