Day 58: Forging forward. Chimerism results are in, and we’re moving ahead with DLI.

Idan unpacks after returning home

Idan unpacks after returning home

Not more than a few hours after being released from the hospital, we received word about Idan’s chimerism test results.  They were not as good as we would have hoped, but they did not confirm our worst fears either.  Instead, it seems that Idan’s donor t-cells have held their ground at 7%.  Two of his other cell lines (the NK-cells and B-cells) are even edging up in favor of the donor cells.  While it is still too soon to predict what this means for the outcome of Idan’s bone marrow transplant, it seems that the graft is holding on.  What we do not know, however, is how long the t-cells can hold on, and whether they will ever rise above 7% without intervention.  If they do not reach at least 20% (but better case scenario is 100% of course), then the entire transplant is a failure, even if every other cell line perfectly engrafts.  So, in an attempt to save the graft and give the donor t-cell’s a boost, we are moving forward with the DLI on December 24th.  The DLI is essentially an infusion of the donor’s lymphocytes (i.e., t-cells) directly into Idan’s blood stream.  These are mature t-cells, so we think they will be better equipped to fight off Idan’s old t-cells and can help clear more room in Idan’s bone marrow to allow the *baby* donor t-cells to thrive.  We hope to be in the hospital for only one day for observation, but it could turn into a longer hospital stay depending on how everything goes.  The DLI poses a risk for graft versus host disease, so we will be watching Idan even more carefully over the next few weeks.

As for Idan’s fever, we still do not know the cause.  It broke some time on Sunday afternoon after a new antibiotic was started.  However, every test imaginable (short of invasive imaging or the like) showed no infection.  That said, these tests cannot test for everything, so there still could be an infection lurking somewhere, which would make sense given the timing of when Idan’s fever broke.  We hope that the antibiotics did the trick then.  Another possibility is mild graft versus host disease, which can be brought on by an increase in the donor cells.  We now know from the chimerism tests that Idan’s donor cells did increase (even if at the same rate as his own cells), so this is definitely a possible explanation.  The truth is we may never know what caused the fever, but we hope we have seen the end of it!

And in his never-ending quest to make sure we all keep laughing and smiling despite the bad days, here are a few clips of Idan that we think you’ll enjoy almost as much as we enjoyed these sweet moments:

Idan building his first gingerbread house:  Link

Idan after he managed to eat most of the gingerbread house:  Link

All our love,

Amanda, Akiva & Idani

7 comments for “Day 58: Forging forward. Chimerism results are in, and we’re moving ahead with DLI.

  1. Linda Wachtel
    December 20, 2013 at 5:24 am

    Keep believing, hoping and fighting! You’re in the thick but he’s a beautiful spirited little boy.
    On our way to Israel tonight and will put his name on a note in the wal with hope for healing.
    Keep posting.
    Xoxo

  2. Becky Peterson
    December 20, 2013 at 7:57 am

    Amanda & Akiva, I could wait to find out the results this morning…altho, as you say, not as good as what we would have liked to hear, they are still not as bad either, as they could have been. Praising God for the donor that is willing to, once again, give Idan a chance at a long, and healthy life on the 24th. I guess we are in the hurry up and wait stage now, and I do believe Idan will come out a winner! Please know I am thinking of you all and praying for complete success, and much strength, to carry you all through out this process!!! Much love and many hugs from Becky, & please give my little rock star a kiss for me:)!

  3. Raisele
    December 20, 2013 at 8:08 am

    The fact that his T-cells are holding on is a very positive sign. Maybe they just do need a little “boost” and the DLI will do the trick. I ran into an old friend last night and of course our conversation turned to Idan. He is leaving for Israel next week and just like Linda W, has said he will put Idan’s name in the wall. We’re all praying for a successful procedure and complete engraftment.

    The videos are just too cute. Idan on a sugar high – he looks ready for the NYC Marathon!

    Love and blessings to all of you, including Idan’s extraordinary donor!

  4. Kathryn Ordower
    December 20, 2013 at 8:30 am

    Love you guys. Thinking of and praying with you every day!!! xoxox

  5. akiva.amanda@gmail.com
    December 20, 2013 at 10:33 pm

    Thank you for the encouragement!! It is much appreciated – and much needed…

  6. Zoe & Moshik
    December 22, 2013 at 9:58 am

    Thinking about you and missing you back home. Zoe and Moshik
    Neshikot

  7. JOHN PIERCY
    December 24, 2013 at 8:59 am

    each day i pray for little idan
    and for you both as parents , mayGOD give you the strength that you need and may HIS HEALING TOUCH BE ON YOUR DEAR LITTLE SON .
    GOD IS THE GOD OF THE IMPOSSIBLE shalom
    john

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