The week began with a meeting at the hospital where Annie had her first BMT. It was unbelievable (and comforting) to see how excited Annie was to be back there. Exiting the freeway she exclaimed, "I remember this!" Entering the property she rejoiced, "Every hospital should be like this, see the beautiful gardens!" As we drove to the drop-off area, "Look - all the old people!" As it turns out Annie finds much greater comfort from the calm nature and pace of a suburban hospital mostly filled with older patients than the relative chaos of a city hospital that caters to children.
We had a thorough meeting regarding the plans for Annie's treatment. In a nutshell there are three parts to a BMT. First the pre-regimen. This begins with multiple full-body tests to assess for any other issues that could create complications. Next comes the job of killing her existing immune system. This will be the first of the two nasty bookends. Obviously there is nothing pleasant about living through a part of you dying. This task will be accomplished with a combination of total body irradiation (TBI), cytoxan and fludarabine. One conciliation is that she is in the most experienced hands we can give her and everything possible will be done to minimize the unpleasantness. She will be in isolation from this point on as the process will render her body utterly defenseless against infection.
Next comes the transplant, a surprisingly simple process of dripping donated stem cells in fluid through an IV line for a short period of time. Then there is a three-week period of anxious waiting to see if the donated stem cells successfully repopulate her body. If that hurdle is cleared the second bookend commences. This is the war of graph versus host disease (GVHD). This we didn't really have to deal with before as she received her own stem cells we had stored from her cord blood. GVHD can range from minor to acute. Factors affecting this are the dynamics of the donor cells, how well her system was destroyed and how her body responds to the graph. The path is measured from Day 0 at transplant to Day 100 with hoped for milestones in between. There is no one description of Day 100, it is a convention. For each individual, life post transplant is unique and really not an ending. You work with your transplant for the rest of your life to varying degrees.
While that is the path, we don't start down it until a donor is identified and, hopefully, willing to become part of the journey. This will be a big part of our story for the month ahead. In the mean time, the week was gratefully pretty-routine with no acute bloody noses or ER visits. Of course routine for us doesn't mean uneventful. There was the small matter of Annie tripping over her backpack on Thursday and ending up on crutches. Luckily we dodged a bullet with that one and she was back on her feet the next day. As you can imagine we work very hard these days on keeping an even keel no matter what life throws at us.
Prayers for a sucessful match are in the works! Lets hope that the recent large number of people who have given samples of there makeup yields a perfect match for Julianne!
ReplyDeleteI love her spirit. My mother told me that I would get within two miles of the hospital and start to freak out. It says a lot for Annie, the hospital and her parents that she can stop to admire the flowers. She's very special.
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