Day 96: Stable , Still in Limbo

photo1242013After the dropping chimerism from last week’s test results, we were dreading the news of this week’s chimerism test.  All lines seem to be stable, thank God.  While we are far from where we had hoped to be by Day 100, we are nonetheless grateful that the Myeloid graft appears to be holding on – at least for now.

Looking back at the overall trend, our doctors in Seattle consulted with every known expert on earth about what to do next.  Multiple doctors have voiced the opinion that it is best to sit tight and wait, hold off on the next DLI, for now, and see if the numbers start to go up.  They are all reassured by the fact that his counts have actually remained relatively stable, all things considered.  For this reason, they believe that another DLI at this juncture could do more harm than good as it carries the risk of both GvHD and annihilating Idan’s bone marrow.  The plan for now is to re-check the chimerism on February 10th, and re-consider the DLI if his counts drop.  Until then, a 12% T-cell graft may not be enough to cure Idan’s Hyper IgM, but, if it remains above 10%, it may just be enough to ward off the cancers that often plague children with the disease. photo (6)

Amazing how a little morsel of good news (the graft is not in free-fall as we feared) can go a very long way.  The sun was out the past couple days here in Seattle, and if you look really closely, you can see tiny buds beginning to grow on the trees in our neighborhood.  There’s nothing quite like hint of Spring to fill you with hope and the promise of life, no matter how bleak things may look at the time.

5 comments for “Day 96: Stable , Still in Limbo

  1. Linda Wachtel
    January 24, 2014 at 9:40 pm

    It’s the true meaning of thankfulness….
    One day at a time and focusing on the gifts of the ways Idan is growing and thriving….

  2. Babette basista
    January 25, 2014 at 6:57 am

    Sounds like realistic but very cautious optimism.In the meantime what a sweet , adorable little boy you have. Your endurance through this is so enviable.

  3. Shuky's aunt Rivka
    January 25, 2014 at 11:29 am

    We are with you. You are in my prayers.

  4. Raisele
    January 25, 2014 at 1:05 pm

    Remember after the transplant, how Idan’s neutrophils shot up from 260 to > 1030 in a little over a week? Well, maybe nature is just balancing things out now, so his T-cells are climbing more slowly. I know, that’s totally unscientific, but you never know. There may be a very happy surprise to come. In the meantime, “stable” is good!! As always, sending continued positive thoughts and of course, much love.

  5. Becky Peterson
    January 25, 2014 at 7:14 pm

    Truly, so thankful, the numbers are holding their own right now! Hopefully the next test will show even better results❤️Give Idan hugs & kisses for me:)
    Keeping you all in my prayers! Love, Becky

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