Thursday, August 1, 2013

Kev finished the BEAM chemo last Wednesday and received his stem cells the next day.  The chemo was wretched and he is feeling quite poorly in general right now.  The chemo did the job of killing off his bone marrow and his blood counts plummeted over the weekend.  He began receiving Neupogen, a white blood cell booster, on Tuesday and today his counts went up slightly today, which is good.   He does have a low grade fever (he had one last transplant as well) which is one indicator of stem cell engraftment, but of course the docs have to treat him as if it's an infection and put him through a slew of tests and antibiotics.   It frustrates Kev and I when the doctors don't communicate well and therefore create an environment for undue worry.  A simple, "this is most likely engraftment but we need to be sure," would go a long way when you're lying in bed already feeling like you're a step away from death (okay-dramatic, but I'm not in the best mood today).  We're hopeful that this fever is, indeed, engraftment and that this won't delay anything.  I want to give a shout out to Kev because he really is an amazing patient.  He shared with me that when he leaves the hospital he wants people to say," that is a pretty awesome dude." I think we can all say, "true that."

Now, who would like to hear some good news?!  We found out yesterday that his allo transplant is going to be done on an outpatient basis!   Sounds crazy, right,  since this one is the "big one?"   Here is the science behind it:  an auto transplant is called "myelo-ablative."   This means that it wipes out the marrow, taking his counts to zero.   The allo transplant will be "non myelo-ablative"  meaning the chemo is lower dose and it only slightly lowers his levels.  So since his levels won't drop as severely and he won't be as at risk for infection, he can stay home.  The non myelo-ablation gives Matt's cells the ability to "win" against Kev's cells (which we know are bad since they let cancer run rampant).   This effect is considered graft versus host disease (GVHD) with the word disease being a slight misnomer since it's actually a good sign.  Some manageable GVHD is welcomed as it shows that Matt's cells are working (this seems a bit sci-fi to my brain).
Kev will still need to go to the clinic daily, and we have been warned that if they even sense something out of whack, he'll be admitted immediately.  The actual donor transplant will feel easier to Kev due to the lower dose chemo but he will probably begin to feel that GVHD about two weeks after. THAT can linger on for years.   Please pray that his GVHD will be mild (e.g. skin reactions) and not severe (e.g. liver malfunctions).   The fact that Matt is a perfect match is a good sign for this.

 We also leaned yesterday that it won't be 2 or 3 months after this auto transplant, but actually 2 or 3 weeks.  The docs don't want to give the cancer ANY time to consider returning.  We agree.

 We were also hopeful that the plasmacytomas would completely disappear after chemo so there would be no question of the effectiveness, but they are still visible and obvious to the touch. They have shrunk dramatically and the doc considers them to possibly be scar tissue.  We won't know the answer to this because there will not be a restage before the allo.   The allo will commence no matter what.

 We're hopeful that Kev can come home no later than the week of the 12th, and that this time passes quickly and uneventfully.   Nothing has happened this way for us yet so it's darn near impossible to stay positive without thinking in the back of your mind,  "well that's probably bull puckey." My prayers are beginning to feel like a laundry list of requests and pleas to God which, for whatever reason, He has just not been acquiescent (some of you may be thinking, "that's because there is no God", and trust me, I have my moments.....).
So here you are Romans 8:26, sharing with me that, "when we do not know how to pray as we should, the Spirit Himself intercedes for us with groanings too deep for words."   This amazes me because God KNOWS we'll struggle with this through a trial and He loves us so much that He's provided us with a way even when there is no humanly way.  Calling for God and asking the Holy Spirit to intercede for me has been amazingly powerful, reiterating my knowledge of the Truth.

Sometimes I panic because there is not enough time to write thank-you notes!  We are so thankful for all of you.  You are proof positive that blessings flow from God through the people He created.

May God bless you,
 Kristin

**  Some caveats:
I have no idea if I'm spelling myelo-ablative correctly.
I may be slightly off in explaining some things about GVHD... I'm a mere lay person.


 


1 comment:

  1. I hope nothing but the best for all of you. My heart aches for all of you. I will continue to send my prayers.

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