Day 45: Not looking so good.

Idan was too busy catching up on the latest celeb gossip to be bothered by his test results.

Idan was too busy catching up on the latest celeb gossip to be bothered by his test results.

“Fear is the mind killer.”  It is one of the first things Akiva taught me when we first met.  Today, that phrase repeats itself over and over in our heads as we received some disturbing news.  Idan is showing early signs of rejection.  The chimerism test that was inconclusive two weeks ago has shown a drop in donor T-cells.  While all other cell lines remain mostly or fully donor, it is likely that these cell lines would be lost if he loses the remaining donor T-cells.  There is a chance the donor T-cells will come up, but our doctors have consulted every expert in the world on transplanting Hyper IgM, and the consensus seems to be that this is an unusual case in a disease that is particularly difficult to transplant.

So tonight, we are drilling down on what our options are.  The first option is to wait and see what happens, but you all know us too well for that.  The second option (assuming it is available) is a donor lymphocyte infusion (a “DLI”).  We are strongly considering that as it is basically an infusion of the donor’s T-cells that gives a boost and helps give them an edge in this battle over space in Idan’s marrow.  Unfortunately, given the fact that the holidays are right around the corner, and Idan’s counts dropped precipitously in the matter of a couple weeks, we may run out of time before we can get the donor’s T-cells.  The DLI comes with increased risk of GvHD, but compared to the harm of having to do a second bone marrow transplant, it may be our best shot at giving Idan a chance at a long and healthy life.  However, if the donor is unwilling or unavailable, the DLI is not an option.  And if the donor cells drop below 5%, the DLI is not an option.  There are a few cases here and there of T-cells coming up over the course of a few months, even if they drop to zero, so a few of the doctors are hopeful (but not quite optimistic) that the counts eventually go up.  If Idan’s T-cells do go up, the DLI may not be necessary, but only time will tell.

For now, we have chosen to try the DLI should it be both available and necessary in two weeks.  If we wait and see, we risk losing all of the T-cells, and the transplant would be a failure since those are the cells we need to replace in order to cure Idan.  We are still scratching our heads how, of all the cell lines to come back with such fervor, it is Idan’s defective T-cells that are most stubborn.  But no one said this would be easy.  We repeat the chimerism test on December 16th, and go from there.

So, after an emotional night and a new plan of action, Akiva and I are preparing ourselves for battle again.  We’re sorting our way through the terror, and forging forward.  Fear is the mind killer.  So, instead, we dare to hope.  We hope that, with the strength of an army and with the love of his parents and family, Idan will be cured.

 

13 comments for “Day 45: Not looking so good.

  1. December 7, 2013 at 1:10 am

    Our prayers are with you guys.
    העיקר לא לפחד כלל!

  2. Becky Peterson
    December 7, 2013 at 1:19 am

    My heart just sank, as I know yours has. We have to keep the faith and positive thinking going…SO POSITIVE THOUGHTS ONLY & moving forward! Good news can appear just as quickly as the “not so good”! Never give up, and I know you won’t. Give my little Rock Star a hug and a kiss for me! Becky P.

    • Jackie Rucker
      December 7, 2013 at 4:03 am

      My heart just sank like Becky’s, but I know God is fully in control and we trust in him to make all things fall into place! Still praying for this precious child and your both! Jackie R.

  3. December 7, 2013 at 5:29 am

    Please stay strong, even under these difficult times. You three are powerhouses of strength.

  4. LindaWachtel
    December 7, 2013 at 5:43 am

    One day at a time… You know how to do that…and don’t get immobilized…options are a powerful source of hope and strength…not knowing and waiting is so difficult….i wish there was something more meaningful I could say…
    Love to allow you… Please keep frequent updates coming…xoxo

  5. Hillary Glaser
    December 7, 2013 at 6:41 am

    I’m sending you guys love, light, and tons of positive energy. Stay strong, just as you’ve been.

  6. Raisele
    December 7, 2013 at 7:42 am

    Very few roads in life are a straight path. There are always detours and setbacks, elations and disappointments, but none of it will matter once Idan is 100% cured. You have the best medical team working with you for help on earth, and countless prayers being said for help from above. And the very good news is that Idan remains healthy and strong and is as ready to fight this next challenge as you are. Sending you all lots and lots of love.

  7. Lena
    December 7, 2013 at 7:59 am

    Stay strong and keep on fighting. Sending all of our positive thoughts to you in Seattle. Refuah shlema Idan!! You are our hero!

  8. Pnina
    December 7, 2013 at 2:43 pm

    As I have been following all of your updates, so sad and heartbreaking to hear the new after Shabbat is over. I will be praying for Idan speedy recovery! It does sound like you have the best medical care there is and hoping for his 100% refuah shlemah.

  9. Carole Zabar
    December 7, 2013 at 2:56 pm

    I cannot tell u how my heart sank. I don’t pray as a rule but I am giving yu all my prayers. Love Carole

  10. Rebecca (shuky's aunt)
    December 8, 2013 at 9:50 am

    I am praying with all my heart for his recovery.

  11. December 8, 2013 at 5:39 pm

    You continue to inspire this army with your strength. Praying for you and your beautiful Idan.

  12. December 9, 2013 at 5:33 am

    Praying for Idan. In awe from your strength and spirit. רפואה שלימה במהרה

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