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:
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.
God Bless, Kristin
If only we could lift you and Kevin above all the pain and worry. We have hope and faith that's what our prayers can do as we think of you each day.
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