Crash Day 168

Today was a day that took us all over the map.  First we had confirmation that the Stem Cell Transplant from last September has failed, the graft is gone.   My marrow is no longer producing any red blood cells or platelets.  The doctors expect that some white blood cells are still being made.  This of course makes me completely transfusion dependent.  In the last week I have received 6 units of packed red blood cells and 3 units of platelets.  The expectation is that these whites are from my own stem cells.  They are few in number and of less ability of healthy cells, which means my weak immune system is growing increasingly frail and I am becoming much more vulnerable as the days go by.

Why did the transplant fail?  That is a question that will never be answered completely enough for my satisfaction.  Last summer the doctors had said there was a 1 in 3 chance of CMML returning, which would require some of my stem cells to survive the high dose chemotherapy.  Obviously plenty survived.  The assumption is that some of the donor cells engrafted and there was always friction between the two.  My blood type never changed as we expected, we had no GVHD which is probably because there was not a strong enough graft to cause a problem.  The anti rejection drugs probably masked the struggle between the two weak stem cell groups.  For some unknown reason the donor cells are now all gone.  Testing is being done to try to find if any viruses, mineral or vitamin deficiencies may have been a contributing factor to the failure of the graft.  This is all important for going forward.

Last Thursday the doctor called me at home and one of the things we talked about was that they found no CMML in the biopsy and aspiration. This has since changed, and with further investigation cells were found  that show I still do have CMML.

Bottom line is, I need more effective stem cells in order to survive.  I have had 30 units of RBC since my transplant in September.  This cannot continue indefinitely.  All that blood has also loaded my body with iron which is hard on my liver.

Why not do another stem cell transplant?  It is the only place I can get new stem cells.  Now a new host of problems.  The doctors do not think I can survive another high dose chemotherapy regimen, at least the effects of it.  My body has been beat up by the last round, my organs have been damaged in the aftermath, and they are afraid of organ failure if they proceed in the same manner.  They do not see this to be a viable risk to take.

They would like us to consider a Reduced Intensity Transplant.  This would be a lower level of chemotherapy in order to reduce the side effects on my body.  The idea would be to suppress the marrow and allow for donor cells to engraft and kill the weakened stem cells.  How would the cells from the 2nd transplant fare any better than the first round?  That is the big question!!  The doctors here have talked this case up to their peers around the country.  They are considering a stem cell collection from the marrow instead of a peripheral stem cell collection (from the blood). The hope is that cells collected this way would have a better chance in marrow proven to be difficult to engraft in.  This has not yet been decided.  We will see the doctor again on the 19th and set dates and procedure plans. It needs to be done soon.  Last week of March tentatively.

How well does he expect this to work?  That is a much harder question to answer.  He gave us no numbers or percentages to play with and consider.  The chance of expected success is quite low.  Not doing it means I will die from CMML.  Here there is a medical chance of survival.  I am 51.  I have a wonderful wife, my children and grandchildren, family, friends, church family.  Of course we need to try.  I have been created to live.

In the meantime I will be going to the cancer clinic twice a week for blood tests and possible transfusions.  We cannot allow my blood to get as low as last week.

These are the brutal facts of facing your death. We don't know when that day will arrive for us.  The doctors imply that likely that day is fairly close for me.  Where do we turn, how do we make any sense out of it?  We turn to the only One that ever made sense of living and dying, our Saviour Jesus Christ.  At supper tonight I read the verses found at the top of this blog.
 Isaiah 43:1-3a
But now thus says the LORD,
he who created you, O Jacob,
he who formed you, O Israel:
"Fear not, for I have redeemed you;
I have called you by name, you are mine.
When you pass through the waters, I will be with you;
and through the rivers, they shall not overwhelm you;
when you walk through the fire you shall not be burned,
and the flame shall not consume you.
For I am the LORD your God, the Holy One of Israel, your Saviour.

Prayer Requests
1.  Give thanks that the Lord has been our refuge again today.
2.  Pray that the Lord will strengthen us each day in our weakest moments....
3.  Give thanks that a possible solution has been found and that He may bless it for my healing.