Back On Track

Sorry to keep everyone wondering what is going on. Truthfully, we spent most of the time since my last post waiting to hear news ourselves. The FDA finally released the hold & we are back on track with a lot of revising of the protocol. For starters they are no longer giving the medicine directly in the brain via the Ommaya. They are going to give it via a lumbar puncture into the spinal fluid.
So we arrived back @ NIH this past Sunday. Our flight was great! Julia had some baseline testing on Monday & then the first of 2 lumbar punctures during this visit, on Tues morning. Everything went awesome. during the 1st LP she only got saline, but next Tues she will get the cyclodextrin. Between now & then she will have a few more tests & blood-draws, but we should have quite a bit of down time this weekend to enjoy this beautiful weather :)