Monday, March 12, 2012

Day 55

We've had a BUSY last few days. The weekend wasn't too bad, fortunately, but Thursday and Friday were real doozies.

I didn't know where to put this. There is an excellent blog about a little girl with leukemia here. Today's is a tear jerker. It's on my blog list now, too, so you can keep up with it.

On both days, we went in at 7:30 a.m. to get Foscarnate. Once they'd given me the Foscarnate and whatever else I needed—usually Magnesium—we went over to the Photopheresis room for a 4-hour treatment. There, a machine separated my blood into red cells, white cells, and platelets, then exposed the white cells to ultraviolet light to damage the T-cells. Apparently, the T-cells are the cells causing Graft-vs-Host disease.

UV protective glasses are required for 24 hours after Photopheresis treatment
But the treatment doesn't simply destroy the T-cells. They put a medicine in the white blood cells, and when the T-cells go back in the body, they die in such a way—called apoptasis—that they announce to the body that they're supposed to be dying. Anyway, all of this, explained the doctor, helps prevent Graft-vs-Host disease without affecting immune function as much as other treatments do.

Photopheresis is still an experimental treatment, and doctors don't fully understand why it works, but studies show that it does, which is what's important.

Enjoying the glasses
After the 4 hours of Photopheresis, we then wandered over to a different section of the hospital to receive an evening dose of Foscarnate, which takes another 3 hours or so.

The end result was that on Thursday we were at the hospital from 7:30 a.m. to 11:30 p.m. with a break of about two hours around suppertime. Friday we stayed straight through from morning to about 8:30 at night.

Very tiring.

The Photopheresis machine
This week I have three more evening treatments of Foscarnate, so I'll go back tonight, Tuesday evening and Wednesday evening. Thursday and Friday I'll get two more afternoon Photopheresis treatments, but there's no evening Foscarnate infusions. I'll only be getting the Foscarnate once a day in the mornings.

This morning was fun, though. Jerry was in the stem cell clinic to have his blood checked, and it turned out he needed magnesium. We wound up in rooms right next to each other, so I pulled a chair up at his door, letting my IV line run back to my room, and we visited most of the time we were there.

They finally seem to have his lung problems cleared up, though now they say he has a blood clot that needs to be cleared up by some blood-thinning medication. His medication seems pretty awful. It's injected in his belly each day, and every shot leaves a small bruise.

Still, the doctors seem to believe Jerry's well enough that they're going to let him go back home to Virginia for a week. His wife is administering the shots for his blood clot.

Finally, we were very encouraged when the doctor came in today. He commented on how well I was doing after everything I've been through, and he seemed genuinely excited that I've come through all this so healthy. It was a little surprising to hear, but very encouraging.

Oh, for those who are coming along behind, it's 55 days, about 8 weeks, since my transplant, and my white blood cell counts are in the normal range and they seem to be stabilized there without my having to get Neupogen shots to keep them there. My red blood cell counts have sat stable at a really low amount for a long time, and they seem to still be there. Today was the first time that my platelets have gone up on their own, but they didn't go up very much. The count is 38, and normal is 150 or higher.


  1. So great to heat the doctors encouraging words Shammah! Was wonderful to hear your voice on speaker phone this weekend while we were at the retreat. Your email to us was off the scale. Thank you , thank you, thank you!!! God bless you all
    . Love,

    1. I stand in AWE of God..look what He has done!!. I raise in voice in praise to Him!! thank you for your witness and radical faith Shammah.
      I thank God for Hannah and her pure love. You both have challenged my faith
      to a higher place.
      love you...Maria

  2. Long days, but what encouraging news! Praying and continuing the journey.

  3. The sunglasses remind me of Mr. X ;-) LOL! Remember the game Scotland Yard? Great Memories!

    Your way of making things "light" even in not so happy situations, always inspires me :-) Thank you for your example!

    We are root'n for you! Just over half way there, unless of course God has a different plan :-)

    Love you!

    ~Chasah Copenhaver

  4. We still have the game Scotland Yard. I'll have to donate the glasses when this is all over.