Monday, June 3, 2013

First night disconnected from pole

Good Morning,

We are so pleased to announce that Xander is off TPN-Lipids now. His gut has handled the food very well and yes, a stool update - first "almost normal" BM today! Xander was very happy with this too.

He is on all oral meds, except for the prednisone and Magnesium. The prednisone will be switched over tomorrow. Dr. Anderson will treat him for the prednisone this time before he has it orally. Hopefully this will help eliminate any negative side effects.

He has had 3 ECP treatments so far, and hopefully 3 more this week. The one they tried this morning ended in short without a treatment due to an instrument failure. Not Xander's instrument, but the machine itself. Interestingly, they are able to give him back all of the blood that they collected, even before it was treated, and he didn't need a transfusion today before the treatment, so no negative issues here, just the fact that they couldn't finish the treatment.

Xander has gotten to enjoy the weather a bit, and has taken many short walks.

Day +34 Lookin good

His counts are doing great, despite the oral ganciclovir:

Hemoglobin: 11.1
WBC: 10.4
Platelets: 62
ANC: 8.9

This weekend, we threw Molly an early Birthday party for her friends at school (her Birthday is in July). This was a lovely celebration and we are happy to have been in a position to do this fun event! Thank you to all of you who attended, and we were blessed with sunny skies! Thank you to Grandma Peggy for staying with Xander so that we could both attend.

Fun with Water Balloons

Peace and Love to all of Xander's followers,



  1. Xander, you look so good! And we're really happy your poop is starting to look good too! (Thank you for not including a picture of that, though!)

    Happy Birthday Party to Molly!

    We love you all,

    Margo, Ethan, Ruby and Jasmine

  2. Xander, sorry I missed ya this weekend... hopefully I can come up and see you this week!
    Love ya, Lucy

  3. We sure wish we could have been a the birthday party. We hope to see you all in September.

    Love Grandma and Grandpa