Thursday, April 5, 2012


Good times today with Xander's new bike! Chris in PT came through with a new bike for Xan. This is so awesome for him. So far today, he has rode for 7.5 minutes, a total of 2.2km. Good for the first day and I'm sure he'll build up to more. We were laughing about burning too many calories though, as he has to eat to make them up! Today, it was only 50 calories burned, so 2 suckers makes up for those easily.

His apetite seems to be coming back slowly... bread, butter, yogurt, chicken broth, saltines, pickles, Zbars and other protein shakes have been good the past few days.

We are happy to report that Xander's Zoster Virus (Shingles) are not getting worse. They seem to be running their course on 3 nerves. We are praying that this remains the case for the duration of their existence (about 14 days or so)

We are waiting on the cytogenetic testing to come back to see if the donor cells are still working. The virus may have an effect on the cells, so if that is the case, we want to find this out as soon as possible. We are now working with Dr. Levine and he is great - very proactive and very knowledgeable.

The cards that you all have sent have been very heart warming and sweet and are appreciated very much. Xander and Molly just LOVE getting snail mail ;)

Love to All


  1. I love the video, Xander, it looks like fun!



  2. Wow a bike in your room, cool!