Postponed

So it looks like I posted a day too soon. I received a call yesterday from Nicole @ NIH to say that they are temporarily postponing our return. As things unfold with little Cassie Hempel the NIH is taking the opportunity to take a step back & consider all the information available to them to make sure they are doing everything possible to minimize the risk the surgery poses for our NPC children. I appreciate this about the team of doctors so very much, that they are not rushing recklessly through this trial but stopping every so often to make sure they are seeing all the pieces, so to speak. While I am slightly disappointed because we were ready to go back, I know that they are absolutely acting in the best interests of Julia & every other patient involved in the trial.

Ready to Try Again

So here we go again. We have talked to the doctors @ NIH & are ready to begin our journey again where we left off. Julia is a little nervous as am I, but we can't just stop here. If we do then everything we have been through has been for nothing, & we can't live with that. We are not ready to give-up our fight yet, we just had to regroup & renew our strength to continue on. Julia & I will fly to Md & she will have surgery on Apr 22nd to implant the new Ommaya so we can continue on.