Monday, June 20, 2011

Big news! The "end" is in sight!

Clara and I went into the hospital today for her weekly checkup.  I have been asking about several things for a while now and last week made sure to emphasize a few so that the issues would be discussed by the team, decided, and that I would finally get answers by today.  I have those answers!

  • Clara's skin continues to get descriptors of "pristine" and "great."  She continues to have bumps on her scalp, in her hairline, on her forehead, and recently in her eyebrows and on her eyelids.  It has been responding well to lotion and so eczema is not out of the question.  However, I think they really don't know what these bumps are, but truly don't think it is GvHD.  I still have my concerns.
  • She will be done with tapering 1 of her 2 immuno-suppressants (MMF) no later than August 28th but possibly as early as August 14th assuming she continues to do well and not show signs of GvHD.
    • Once we are done with the MMF, we will begin tapering the 2nd immuno-suppressant (Prograf).
  • The Prograf will be tapered by 10% each week which means we can expect to be done with all immuno-suppressant drugs around the end of October/beginning of November!
    • Several things "happen" once we begin tapering the Prograf.
      • We will no longer have to go into the hospital weekly (possibly only 1x/month).
      • Her central line (this was Question # 1) can come out because we will be drawing labs so much less frequently. This is a procedure done under general anesthesia. So, they will draw a marrow sample at the same time to check for leukemia and for how much of her marrow is hers versus the donor's cells.
      • She will require fewer electrolyte supplements and therefore fewer meds to give by mouth.
Once she is done with the MMF and Prograf, her immune system will be similar to that of a newborn baby - naive and at risk.  It may even take a few months for it to become as "strong" as that of a newborn.  I understand that it will be tested at different intervals to see if it can respond to a vaccine by creating antibodies at which point we will begin with the normal course of vaccines all over again.  It is also at that point that I believe we will transition out of the care of the Stem Cell Transplant team's care and back into the Hemetology/Oncology team's care.   This post immuno-suppressant stage is one that is still vague to me.  However, it is one we will finally begin anticipating and of course asking many questions about in the next couple of months!

(Question #2)I also asked for permission to take Clara more than 20 minutes away from the hospital - for a day trip to Napa when my parents come for a visit in early July.  The answer was yes!  While she is still highly at risk for infection and illness, I am assuming this means they are relaxing the isolation restrictions.  I was too excited to question whether or not this means we could also run errands (grocery store) or go into a restaurant etc because I am pretty sure that is all still off limits.  I think they just know she is strong enough and that we are still mindful and cautious about what she is exposed to that they trust we won't go crazy.  I'll have to ask for more details on that next week.

(Question #3) Clara is also finally allowed to go to OT.  She has been making GREAT progress with what she and I are doing on our own.  I can't wait to see what she does with some coaching from the feeding experts!  Perhaps by the time she is needing less oral meds, we can pull the tube because she will be eating so well on her own!

1 comment:

Mom/Mimi/Mama Deb said...

Daddy said he knew about the release for the Napa trip, but he DIDN'T TELL ME!!! I am so excited! For you more than for us. That is great and something we can all look forward to, huh? Won't be long now. OXOXOX

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