Hi Jordon's Mom - I'm so glad you both found this site and also that your daughter found Miss Kate, too. I've kept up with Miss Kate's blog, and the friendship that has developed between the two of them is so gratifying to see. It is so good that you are getting other opinions and MD Anderson is certainly one of the best! My son's diagnosis was quite different from Jordon's so I cannot offer any opinions there, but I am sure you will hear from others on this site. I know how heart wrenching it is to have to see one's own child go thru something so horrific but there are lots of wonderful, compassionate people here and a tremendous wealth of information available. Sounds like you are on the right tract with the procedures you've taken so far. Stay positive!