Day +299

Today we begin what I hope will put an end to GVHD and allow us to move forward.  As we start this new course I am reminded that not everyone is as familiar with a lot of the terms I use so I thought I would take a step back and explain what is happening.
With the recent biopsy results we know that Georgia has Graft Versus Host Disease, something that is common in transplant particularly when you have an unrelated donor.  Georgia's new bone marrow although still suppressed is "awake" in her body and aware that this was not its original home.. as the bone marrow is "looking around" at its new surroundings it doesn't always know what is good and what is bad.  The doctors have told us all along that they want to see GVHD, it is the only way they know that Graft Versus Leukemia might be happening... we want the new bone marrow to identify and attack any leukemia cells that might be present.  What is happening in Georgia's case is that her bone marrow, or immune system is attacking part of the lower half of her stomach called the antrum, this is the most common place to see GVHD.  Her biopsy showed apoptosis which is programmed cell death, something that shouldn't be happening in that area, her T cells are attacking her stomach - all contributing to why Georgia doesn't want to eat.
A typical course of prednisone would be 1mg/kg (of weight) everyday for about two weeks then taper to the same dose every other day for three months, then taper to 1/2mg/kg for three more months.  For Georgia things look a little different, we know she absorbed some of the other steroids that were considered "topical" (as opposed to systemic) so the hope is that a lower dose of prednisone (a systemic steroid) will do the job.  Georgia is on 1/2mg/kg (or 6mg) every other day for three months then we will likely have a three month taper - this is the best case scenario.  The hope is that this is what her body needs to calm down the T cell activity and give her immune system time to adapt to its new home.. for some people this takes years, I am hopeful for Georgia that will not be the case.
As with everything in this process this isn't straight forward, prednisone comes with risks and additional medications.  I am already working on a list of questions for our next appointment.  One thing we know for sure is that prednisone further suppresses Georgia's immune system and puts her at a higher risk of infection - any fever will come with a full work up and she will need to have blood draws every two weeks. Brian and I have been criticized for some of our choices around what it means to keep Georgia safe but with the most recent news I have only become more steadfast in our approach, all with the blessing of her doctors.
The bottom line is this, I am afraid of prednisone, just one day in and I've already seen a rageful Georgia, totally unreasonable and very upset.  I am hoping that I have the mental strength to get through all of this, I know there will be frustrating days ahead but more than anything I feel so sad, I want to be able to give Georgia so much more - right now, not when all of this is done, not in the near future... now. 
So now I will ask for help from all of you - when you are sending love, strength and prayers to all of us, send them to Georgia's donor cells too... there is researched proof that cells (living things) do better when "loved" versus being neglected, we want these cells to feel loved, safe and comfortable in their new home.

Here is a little video of what we're currently focused on...