Day 215: Another day, another mixed/inconclusive/not-so-good test result.

5.26Well, it seems like we never really get to have an easy chimerism test.  For every glimmer of good news, there’s an alarming bell sounding in the background.  This month, it is no different.

As you may recall, last chimerisms showed a nice uptick in the T-cell line but still a substantial drop in the myeloid cell line.  The T-cells are what we need to replace to cure Idan, but the myeloid cells are also important and necessary to sustain the new T-cells over time.  Idan needs these new T-cells to stick around for the rest of his life, so we’re fighting this battle on two fronts to make sure he not only has a cure, but that he has a cure forever.

With the addition of the new immunosuppressant, MMF, it seems (without jinxing anything) that we may have stopped the myeloid cells from dropping any further.  But, and here’s the real kicker, the T-cells dropped by half this month – from 30% to 15%.  This could be because the T-cells are really dropping, or it could be a random fluctuation.  Once again, we have no certainty and no clarity.

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Our hearts sank when we saw the T-cells dropped, and we were only moderately comforted by the fact that the myeloid cells seems to have stopped dropping for now (for the first time in a few months, by the way).

We’ll be repeating the chimerisms next month, and hopefully the news is better and clearer.

Once again, we are reminded of how much support we have, from our family to co-workers and friends.  Akiva’s parents are visiting from Israel and Idan cannot be more thrilled.  The last time he saw them in-person was in Seattle, and things were so different then.  He has Skyped with them nearly every day since and was overjoyed to see them arrive this week.

And this week I received a sweet surprise from several of my co-workers who raised funds for Idan and ran in the NYC Brooklyn Half Marathon in honor and support of his courage and strength.  Since returning to work only a few weeks ago, I’ve learned of the great lengths the staff and co-workers have gone to make my transition smooth and ensure I don’t pick up new germs from the office.  They scrubbed every inch before I returned and even placed Purell in the common areas.  It is truly humbling and encouraging to work with such wonderful people, and Akiva, Idan and I could not be more grateful.

So, as sad as we are to receive yet another set of disappointing results, we’re feeling as strong as ever.  In fact, since returning to New York, not a day has gone by that we’re not happily run ragged by our very energetic little boy who is constantly on the move, constantly surprising us.  He counted to ten for the first time last week, and it was ridiculously adorable.  His energy, sense of humor, and incredible capacity for love isuplifting.

 

4 comments for “Day 215: Another day, another mixed/inconclusive/not-so-good test result.

  1. Linda Wachtel
    May 26, 2014 at 7:37 pm

    Stay strong! Choose to believe in Idan’s strength and resiliency all combined with an amazing medical team and the possibilities that can emerge. After all…. Look how amazing Idan looks and how beautifully he is growing and thriving with all he has been through. A day at a time is the motto and don’t allow your mind to go to places that will overwhelm you. Your army is still strongly behind you. xoxo

    • Admin
      May 26, 2014 at 7:43 pm

      As always, thanks Linda for the words of encouragement.

  2. Becky Peterson
    May 26, 2014 at 9:42 pm

    Yes! Stay Strong! I really feel Idan can sense how you are both feeling, so if you are strong, HE is strong! I will continue lifting you all up in prayer. Sending Love & Hugs from Texas!!! Becky

  3. Annette Niemtzow
    May 27, 2014 at 5:20 am

    Again, mixed results are painful to hear and (we know) have. We love you and Idan and keep hoping.xox

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