Tuesday, December 3, 2013

A few days ago, Kev began experiencing some mild to moderate digestive symptoms.  This isn't anything new, he has had these symptoms before, but this time they did not resolve like they have previously.  Instead, the symptoms worsened.
Everyone pretty much assumed it was GVHD (Graft versus Host Disease) since we knew the digestive system is a common area for this to hit, but the doctor still had to run a slew of tests to rule out infections and viruses. 
The outcome was as we expected, GVHD of the duodenum, lower, and upper intestines. 

The bad news:  The GVHD is moderately severe and needs to be put under control.  Right now his intestines aren't absorbing nutrients from food to the level they should be, so he needs to get supplements directly to his bloodstream.  A low level steroid that just coats the digestive tract isn't cutting the mustard, so he started systemic steroids in order lower the donor cells immune response. 

The good news:  The donor cells are identifying foreign substances.  This also includes--you guessed it--cancer cells.  We already see a decrease in the size of the skin plasmacytomas and one of the larger ones has actually disappeared.  This is with no other treatment! 

The "so-so" news:  We want immune response, but we don't want it to this level.  Killing cancer is great, but it has to happen at a level that doesn't kill Kev (pardon the frankness).  The inability to digest food would eventually lead to a poor outcome, obviously, so we are waiting to see how he responds to the steroids.  Hopefully they will be enough and he doesn't have to go back on serious immune-suppressants, since these would also put a halt on the level of cancer killing we're getting now.  It's a dance of the worst kind, but we're happy something is happening. 

Despite all these happenings, the doc decided to go ahead with the radiation to the affected spinal nerve in his lower back.  I'm not sure this is the best move, personally, since the radiation will go through his bowels--that are already irritated--and irritate them more.  But I'm not the doctor and they feel it's still a proactive move. 
I'm not sure at this point if we are going to go ahead still with the chemo (which is planned following the completion of radiation), it may depend on the status of the GVHD, I don't know yet. 

People are asking us if this is "good or bad."  Honestly, I think the scale tips more toward the good side, but I'll be more ready to shout that out once I see this GVHD resolve to a manageable level.  It has already improved moderately but not to the point that we can reasonably live with.

Focus the prayers around continuing to get the immune response but with a reasonable level of GVHD symptoms.  Pray that the doctors make wise decisions and that we receive continued strength and renewed hope.   We're weary, very weary. 

Someone posed the hypothetical to me recently, "so why do we believe?"  It caught me off guard when the answer I've always given: "because of the hope we have," didn't seem to capture it this time, although it is true.
A few days went by before a more comprehensive answer came:  Because I'm fully known.  He knows me truly, fully, deeply.  It is the deepest level of intimacy, completely filling and overflowing what was once a void.

How beautiful.  How amazing. 

Thanks for sticking with us.  We love you all.

Kristin



2 comments:

  1. ...because I'm fully known... So helpful Kristin. Thank you.

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  2. Kristin, we love you guys and continue to pray and know that God is with you and Kev on this journey. If there is anything Barb and I can do please be sure to call or knock on our door. With love, Tom and Barb.

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