Addendum:

Spent a looong day at the hospital, but worth it to hear the news:  the preliminary reading of Jane’s MRI shows her tumor seems STABLE!  We only have the two-dimensional data right now—it will take some time to calculate the volume of the tumor—but our doctor is confident enough in the results to have us restart the Gleevec.

Now we enter new territory:  the clinical trial from which Jane received Gleevec was only one year long, so we will be continuing the Gleevec off-study, as a regular (albeit off-label) prescription.  Jane has never taken a medication for her tumor that wasn’t part of a clinical trial—there just haven’t been such drugs available.  We will have to go through our insurance company and hope it covers Gleevec.  Our doctor at Riley Hospital has promised to advocate for us.

The anesthesia really knocked Jane down pretty hard today.  She came out of anesthesia at about 10 o’clock this morning, but wasn’t really able to open her eyes and sit up until 3 o’clock this afternoon. We managed to make it back to our hotel where she rested for another couple of hours.  She was determined to have her after-hospital treat at the Indianapolis Steak N Shake, so against my better judgment, we went there for dinner.  Jane did perk up enough to charm the manager into giving her a shake on the house, but I ended up carrying her back to our room when she ran out of energy.  She had a warm bath and brushed her teeth, but was disappointed afterward that “I can still feel the hospital feeling”.  A good night’s sleep should fix that.

We still don’t have an explanation as to why Jane’s eye muscle isn’t working properly, but at least we know it’s not because of progression of her tumor or a vascular issue (which can be the case in NF).  For now we will just have to assume it was some combination of NF and the viral illness Jane had, and hope it continues to get better as she recovers.

Thank you to everyone for the good thoughts, vibes, wishes, prayers, luck, and love—it all helped me get through these last few days!