Wednesday, March 14, 2012

A major milestone for us


The doctor removed Beth’s catheter on Monday. That is a major milestone for us. The catheter provided “easy access” to get blood tests, and to give her such things as blood transfusions, antibiotics, or other fluids or medicines she might need. The removal of the catheter means that they don’t see her needing much more of that sort of thing.

Just to summarize where we’ve been, my wife Bethany underwent a “bone marrow transplant” (also known as a “stem cell transplant”, using stem cells from an adult female donor from outside of the U.S.) on December 14 last year. Without the transplant, the disease she had (“chronic myelomonocytic leukemia”, or CMML) came with a prognosis of 12-24 months to live. And it was easy to see, after about six months or so of dealing with it, she had wasted away pretty significantly.

With the transplant, she had about a 30% chance of a cure [living through the complications of the procedure and avoiding a relapse].

In addition to some early hospital stays from June last year, when she was diagnosed, through November, Beth spent three full weeks in the hospital for her transplant (and follow-up complications, December 5-28), then she was discharged but had to spend the next three weeks making daily trips to the hospital’s “short stay unit” (an outpatient unit within the hospital), then three more weeks as an inpatient (more complications -- including two viral infections, another MRSA infection, malnutrition and a blood clot). She was discharged after that for a week, then she went back in for another week with more complications, and finally she came home last week. It seems as if she is through with the complications, although, you can always get something else. Still, it is noteworthy that she lived through all of what she had -- some of what she experienced was life-threatening, and in fact, the mortality rate after a transplant is something like 20% to 40%.

She now needs to be seen just one time per week by the doctor. There’s still a rough road ahead of her. She is going to be immunosuppressed for about the next year (anti-rejection issues). And the possibility of relapse still exists. But she has now had two straight “Chimerism” tests which are showing what they need to show if she is to exclude the possibility of a relapse. A “Chimerism” test shows if there is “mixing” of the donor’s DNA and her old DNA in her blood. She has been “100% donor” on each of these tests, with no appearances from her old, damaged marrow. The longer she goes with no signs of her old marrow, the lower her chances of relapse. After about two years from the transplant, if her Chimerism tests continue to show “100% donor”, then her chances of relapse will have been reduced to about 2%.

For now, Lord willing, she appears to be on that path. The bottom line is that we have made it through the very worst of this process, and while she still has to deal with some of those chronic graft-vs-host (rejection) issues that I mentioned above, something that will last for the next year or so, along with the possibility of infection, it seems as if the Lord has cured my wife of a leukemia.

The money
We found out late last week that Beth has qualified for Social Security Disability payments. That is, Social Security is now paying her about 50% of what she had been earning while she was working. That’s very helpful for us at this point. I had been actively soliciting donations (which were very helpful), and I can’t thank you enough for all of your help in this regard. More than anyone, I need to thank my pastor and my church, which has been paying my mortgage payment for about the last seven months. The pastors and assistant pastors and elders and deacons have been extraordinarily helpful to us through this whole procedure. I haven’t yet begun to go through the hospital bills. I know there are a few things that insurance doesn’t pay for. But it paid for the vast majority of it.

Beth has found a new love for the Lord and a home in my church
Most importantly, as I’ve mentioned here in the past, my wife, while struggling to face her own mortality, has come to appreciate Christ, the Gospel of Christ, and the Presbyterian church in her life.

She was never what you would call “religious”, though like most nominal Roman Catholics, she had her own sense of devotion, and she had been hopeful throughout her life that her “balance sheet” would tip her favorably into heaven. However, through all of this, she has spent a considerable amount of time first of all, just going to church with me, hearing the Word of God preached (quite strongly, I might add), and later, spending lots and lots of time with the pastors and elders from our church, who made it a point to come around to her hospital room on a very regular basis.

Going forward, I believe, our family interests are going to center on our church. Beth right now is reading Roland Bainton’s Here I Stand, a biography of Martin Luther. 

3 comments:

  1. Great news, God Bless you brother!

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  2. As I understand it, 'You are what you read'.
    There's a girl that's gonna "stand".

    Thanks for the update, John

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  3. Thanks Henry, thanks Ron :-)

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