It's been 28 days since Kev received his brother Matt's stem cells.  He is currently half-way done with radiation on the plasmacytomas, and has graduated to being able to skip some clinic days when his numbers look good.  His white blood cell count is rising steadily, along with his other counts.  They will test his level of engraftment (called chimerism "Ky-mer-ism") again in the next few days.  It was 37% 10 days ago, so we're hopeful it has gone up some more.  

The chimerism level is very good news but let me explain that an allo transplant is a very gradual process.  The donor cells have to DO something with the cancer in order for this to be successful.  He could be engrafted to 100%, but if the donor cells are just going with the flow, the cancer will move where it wants.  We need some battle going on, and this battle can take years.  In other words, the cancer will "keep trying" and the donor cells will respond for possibly many years to a lifetime.  Since the cancer is now mostly non-secreting (meaning it doesn't show up much in his blood or bone marrow anymore) the doctors will use PET scans to keep an eye on any plasmacytomas and how the donor cells are handling them. It is the hope that the radiation will take care of the short term and the donor cells can work long-term.  

Currently, both the donor and Kev's T-cells (the type of cell that fights foreign bodily things like cancer) are being supressed by anti-rejection drugs in order to keep a handle on dangerous levels of GVHD.  These drugs are being removed TODAY in order for the "war" against the cancer to begin as soon as possible.  This is not the standard practice ( it's usually after 3 months, not one) but the docs feel strongly that this is the best way since Kev's cancer is active.  They will continue to closely monitor Kev's GVHD level.  Currently his symptoms are dry mouth, some digestive issues, and fatigue...although these may not all be GVHD, it is hard to tell.  He is not out of the woods for more severe GVHD (he is at risk for up to 2 years) but so far God is responding to our prayers for mild symptoms.  It's important to remember that some GVHD is good, as it indicates that the donor cells are identifying foreign cells (which include cancer).  

We are so grateful and overjoyed with how things are going right now with this treatment.  But let me tell you that these days of "in between" have been very hard for me, personally.  Nothing extreme is happening  and days go over and over with a strange kind of new normalcy.  I don't know what is so hard about just "being," but perhaps it allows time for processing and working through things that the flesh would rather keep distracted.  A friend recently hit the nail on the head when she said, "what is it about nighttime and Sundays that is so difficult?"  

What is God trying to teach me about "being during the in between?"  Let me share something with you that is straight from my heart and blessed me greatly to write down:

Sometimes on the really hard days I daydream being at a certain place.  There is a meadow and I am alone.  I am walking and there is no hurry.  I am not hot or cold.  There are no bugs.  I feel clean air in my nostrils and my feet know where they are going.  The meadow narrows and becomes a small footpath.   I begin to hear water, and so I keep going.  I see a small stream, it is noisy, but not rushing.  

I sit down next to the stream and place my feet in the water.  I have company there, and he speaks to me from his seat on the other side of the water.  

"Kristin, come and sit by me," he says.  

"Why must I always come and find you?" I say to him.  

"Those who seek me, find me."  He answers vaguely, but I know what he means.  

I cross the stream and sit next to him.  "I'm so restless and uncomfortable.  I feel like I know the answers, yet I know nothing.  I know what peace is, but I cannot find it," I say.  

He nods and stares into the bubbling water.  

"Come and lay next to me awhile," he says. 

I lay my head on the cool grass next to him and he places his hand on my head.  I lay next to this man, feeling his hand on my head, and I cry.  This crying is not sadness or hopelessness, but an unlocking of something.  I feel that "he knows" and this allows my heart to rest.  

Thanks to everyone who gives Kev a quick text, email, or phone call with words of encouragment.  He is such an amazing man and he is the one who has to fight this everyday.  Doctors, needles, chemo, radiation, fatigue, stress.  My brain cannot fathom what he goes through.  So thank you for supporting him.  

God Bless, Kristin

The time we have been awaiting for almost 2 weeks is finally here.  Kevin began engrafting on Monday.  We know this because his blood counts are beginning to rise again.  At this time, it appears that Kev has not yet started experiencing any Graft versus Host symptoms. This can change at any time and as I mentioned before, some GVHD is good as it means that the graft is prepared to fight against the myeloma.  The symptoms of GVHD that we are watching for are intestinal issues, skin rash, and fever.  Kev continues to drive himself to clinic everyday for blood workups and required infusions.  They monitor him closely and keep a close eye on him (he loves this, let me tell you).   

The plasmacytomas continue to grow and this is very nerve wracking for us.  We spoke with radiation oncology regarding what could be done in this "meantime" period (before and during engraftment) and it was suggested that he undergo more radiation treatment, specifically surface/skin level radiation, for each specific tumor.  The rationalization, of course, is that this cancer is going to move so fast that it will be too much for the donor cells to take on.  We wait with as much patience as we can muster for something good to happen.  We take moments to thank God for keeping us out of the hospital thus far, and for providing for us financially since we are both not working at this time.  Kev is feeling "okay" right now.  His biggest complaints are being isolated, feeling tired, and lingering nausea.  He is so stinking tough, he amazes me every day.  

Please continue to pray for good engraftment and a strong immune response from the donor cells.  We desperately want this to be a successful transplant, and we cling to the hope that we know is ours.  

I would like to share with you a poem that I wrote.  I hope it blesses you in some way, as it did me in writing it.  

I asked God (By Kristin)

I asked God why good people suffer and bad people prosper.

God answered, "Indeed, Kristin, there is no one on earth who is righteous, no one who does what is right and never sins.  Those who suffer I speak to in their suffering and affliction."   

I asked God why Kevin got sick.  

God answered, "You are my heirs.  You share in my sufferings so that you may also share in my glory.  Your present sufferings are not worth comparing with the glory that will be revealed."

I asked God why Kevin hasn't been healed.

God answered, "Trust me with all your heart, and lean not on your own understanding.  Suffering produces perseverance; perseverance, character; and character, hope."

I asked God how this will end.

God answered, "You of little faith, why are you so afraid?"

I asked God when this will end.

He answered, "I offer you all power according to my glorious might so that you might have great endurance and patience.  When anxiety is great within you, let my consolation bring you joy."

I asked God why this continues to persist.

God answered, "Only I know the plans I have for your family.  Plans to prosper you and not to harm you, plans to give you hope and a future."
I asked God, what about our children, why must they suffer this too?
God answered, "I am El Shaddai, God Almighty, more than enough.  No one can snatch them out of my hand."

I asked God if I will ever be happy again.

God answered, "Why are you so afraid?  Do you still have no faith?  I will yet fill your lips with laughter and your mouth with shouts of joy."

I asked God if He was really there.

God answered, "I am the Alpha and the Omega, who is, who was, and who is to come, the Almighty.  I am with you always, until the very end of the age."

Love, Kristin

Biblical References (in order):  Ecc 7:20, Job 36:15, Rom 8:17-18, Prov 3:5, Rom 5:3, Matt 8:26, Col 1:11, Psa 94:19, Jer 29:11, Gen 17:1, John 10:29, Matt 14:31, Job 8:21, Rev 1:8,Matt 28:20

(Disclaimer:  I am not a biblical scholar.  Some verses I have taken out of context to suit this poem.  I have taken liberties with the verbiage of the scripture in order to suit my writing.)