This is Barry, My take on our trip.  The disease Jill has is complicated, because it is a mutation in the PTEN gene.  Most if not all of the issues Jill is having is from this mutation.

What we learned from the experts was It is not going away, could get worst, or could remain stable.  We must stay vigilant to the symptoms and seek medical help should it be life threating.

Personally the trip was a success, very difficult physically and mentally, however The Grace of God was upon us.