Contridictions

Monday, home on Monday.  Good news but then a bit scary.  As any parent will tell you, they miss the 2:30 am nurse after about one night. They are quiet, they come in to visit on "little cat feet" and make sure your child is safe.

We go from home to outpatient.  The goal is to remain outpatient without too much bounce back. There are 36 kids here on the board and 15 of them are BMT patients.  6 are initial transplants and the rest are here for secondary issues. 

 When we leave we will be avoiding such things like fungus, bacteria, viruses and other nasty pathogens.  The SCCA clinic and Children's will be on our regular list.  We already have clinics scheduled for Tuesday.  Blood Draws, appointments, the like.  There will be lots of platelets and blood transfusions. We will be spending lots of time in one of the 77 infusion rooms at the SCCA.

 In a month there is something called the 80 day work-up.  Just like the previous set of tests and scans.  They are looking for evidence of Graft Vs Host Disease.  So far she has been clear but they tell me it is coming.  Sort of like Christmas, no way to keep it from coming.  Again a little is good.

When we started this process we were told that the success rate is 40%.  Three kids received the double cord the same week as Mary-Elizabeth.  We are leaving and they are not even close to leaving.  I have become friends with the families, chatted with the kids and hopefully will be seeing them after this journey.