Wednesday, May 15, 2013

Our Rockstar!

Today I had the opportunity to spend lots of time with Xander and want to tell you all that he is indeed a Super Rockstar! I am so impressed by his determination and perseverance  even when feeling bad and crappy and bad and crappy (yes, bad and crappy).

He has had quite a number of emesis' over the past few days, but today - NOT A ONE! WOOT!

For breakfast he had..... wait for it.... wait for it...... eggs florentine! (I was thinking there was no way he was going to eat this since he has been feeling so bad, but yes, I was wrong - yay) He also had beer cheese soup, brownies and Orgain so far this afternoon. Way to go Xander!

He came down with a rash 2 nights/days ago. Yesterday was spent working on what they would do with the rash and how to best treat it (thank you so much to Aaron for asking ALL of the right questions to make sure the study that we enrolled him in was appropriate!). The docs have determined that his skin rash (as much as they can tell) is GVHD in nature (not a virus). This was determined by a skin biopsy that he underwent yesterday.

His rash responds to the steroid cream and does not seem to be getting worse 24 hours post first dose of Etanercept. This is great news.

As for other issues, his CMV level has now come back as 'detectable'... if it reaches a certain level, then he will have to start Foscarnet twice a day until the level goes back down. This is a bummer and we will pray that the level stays down (next test tomorrow).

Some things we have enjoyed.... Molly doing the dishes, a visit from Michael, and lunch outside in the nice warm weather.

His counts are doing great (we are not surprised at a bit of a drop in the WBC and ANC due to the steroid cream) - today is the first day that he has made platelets (even though just a few thousand we still celebrate)!

WBC: 6.5
ANC: 5.8
Hemo: 9.2
Platelets: 36

Peace, Love and Cellular Harmony,


1 comment:

  1. Hey guys! So glad to hear the update - Xander you are a rockstar!! I know you'll keep pulling through and getting stronger. Your desire is SO Strong!!

    We hope the rash quickly runs its course and goes away. Wishing you as much comfort as possible through the process!!


    Laura, Dale, Wilder and Corbin