Wednesday, June 12, 2013

Hemorrhagic Cystitis under control

Good Evening,

Xander had another rough start to the day, but it ended well.

Today Xander had a visit from Amy and Markus. They worked on the lower abdominal area and healing. This was perfect timing. Right after they left, Xander had his first formed stool in four weeks! This is major progress from even a few days ago. Thank you for the visit.

CMV Update: At it's highest measured level, it was 5,500. We found out today it is now 740. This is way down and the valganciclovir along with HBOT are doing it's job. Hopefully we can pull him off of this drug soon that suppresses his blood counts. Even through these myelosuppresive medications, his counts are doing well.

WBC 3.9 (fine)
HGB 12.6 (good)
PLT 48 <- got transfused on platelets today
ANC 3.0 (fine)
Lymph 0.4 (great, we want these low to reduce gvhd)

Xander has been enjoying his HBOT treatments very much. Here he is tonight, getting treated. Thank you so much to the Oxford Kids Foundation for making this a reality for Xander. The positive effects of this treatment are abundant! One of the most amazing... at 2.5ATA, Xander's GVHD disappears. Seriously, we have it on video. Love it. Hopefully other children undergoing transplants will benefit from this therapy as an inpatient service some day.

Evening in the chamber

Molly has been home from school this week and has spent some time with Grandma Peggy. When I picked her up today, this was attached to her backpack. When you are a child sibling at the hospital, you only get generic stickers, apparently, she had enough of that. How adorable.

Molly Salsitz Floor 7
A big shout out and Happy Birthday to one of our wonderful friends, Julia. We have been blessed to get to know you and the boys and will miss you very much when you move. We are going to visit you in Minneapolis, hopefully sooner than later. Thank you for the dinner and food, what a marvelous surprise.

Peace and love to all of Xander's followers,



  1. glad to hear this progress - Xan, you are a real trooper! ;)

    LOVE Molly's backpack tag...she is a wonderful spirit!

    Looking forward to seeing you soon - Corbin had a bit of a sore throat, so we'll wait a bit.



  2. Oxford Kids Foundation is awesome. We are happy to support them for all of the amazing help they've provided to Xander and other kids with similar situations.