The PET scan results arrived yesterday.  They showed a "significant" increase in cancer involvement.  There was a spot on his lung (which has actually been there before--the second transplant got rid of it initially) and some involvement in his liver.  Because of the increase in disease involvement (including the re-emergence of the dreaded plasmacytomas), the doc pulled his last immune suppressant/anti-rejection drug on Friday.  In an ideal situation, this drug would be weaned down slowly. Our "hand was forced" so to speak to remove the brakes on the donor cells and let them hit the gas.  The risk of doing this is GVHD, obviously, and pretty much within 48 hours we noticed an increase in skin symptoms and mild/moderate facial swelling. 

The GVH symptoms that he is displaying are a good sign.  It means that the donor cells are responding in their "foreign" environment, thus most likely attacking the cancer cells as well.  Because of the presence of GVHD, the treatment plan right now is to wait........wait for the donor cells to do something.  Since we have visible signs of cancer re-emergence in the form of the skin plasmacytomas, the docs are watching these closely.  If he shows an increase in tumors, we may need to re-introduce some chemo in order to make the fight more fair for the donor cells.  The risk of that, however is increasing strain on his body outside of what the GVHD is already doing (plus, chemo attacks good guys too).  I don't know how long exactly we wait for the donor cells to do their work, but such as it is, we won't wait longer than 4-6 weeks if we continue to see cancer movement. 

There is a specific level (called the LD level) that is one indicator of cancer involvement and we have been watching this level rise quickly over the last two weeks or so.  Yesterday, however, on the tail of our bad news, we saw his LD level only rose 20 points.  This may possibly indicate that the cancer level is slowing down.  His other blood counts were great too (WBC, RBC, platelets, etc). 

The news that the "cancer has spread" alarmed everyone.  I have found it takes a few days to process information and sort out what is truly happening.  Here is the bottom line:  THERE IS A LOT OF HOPE.  The donor cells have just been unleashed to their full potential. 

Yes, we were/are very heartbroken by this news, as was everyone.  We knew the cancer was back, but to hear the word "significant" was like a cruel knife twist.   

I have made the choice to allow God's will in my life, as difficult as this is.  I shake my head when I hear people say Christianity is a "crutch" or a "comfort" (I once thought these things myself).  In actuality, choosing to believe the promises of our God despite all odds is the furthest thing from a crutch I can think of.  The comfort I receive is from the Holy Spirit, not the knowledge of my religion.  We will persevere.  God is going to make something beautiful. 

I love you all and may God bring us peace,
Kristin

Update: 10/24/13
LD level dropped significantly today (very promising).   Other counts went the right direction as well.

Update: 10/29/13
LD dropped 8 points... not much, but enough to continue the downward trend.   Kev noted today that some plasmacytomas feel smaller and less swollen.