Day 144: If there’s a will, shouldn’t there be a way?

Day 147The latest chimerism test results confirmed what we already feared – Idan’s graft is slipping, and it’s slipping fast.  It seems his myeloid cell line is slipping by 20 percentage points every four weeks.  It is now at 31%, and it is likely it will bottom out before May.  Idan’s NK cell line, which had been stable for some time, dropped 12 points to 70%.  Idan’s T-cells remain stable, for now, as do his B-cells, but without myeloid cells, none of the other lines stand much of a chance.

There are a couple options that we have been given.  Wait and see, which means more likely than not that Idan will lose his graft (i.e., rejection).  Or, we stop all immune suppression and see what happens, but risk severe GvHD or wiping out whatever is left of the graft. The third option, which seems the most promising based on our initial conversations with other patients but not by any means a miracle-drug, is adding a third immunosuppressant which may favor the donor cells this time.  Idan’s immune system is already very compromised with the immune suppressant and steroids, and will be at even more risk with a third immunosuppressant on board.  Our doctors are getting back to us next week with their recommendation, but the bottom line is that the picture is looking grim.

It helps that we are knee-deep in boxes and still all-consumed in the day-to-day routine.  It also helps that, for the first time in six months, when we receive bad news, our family is only moments away for moral support.

The last few weeks, we’ve been packing everything up and trying to make sure Idan wouldn’t be traumatized by the move.  He helped us pack up many of his toys to be shipped back to New York, and all of his artwork that he enjoyed pointing at each morning.  We even bought wall decals to match the ones he had in Seattle in his playroom.  But, to our great surprise, Idan felt right at home from the moment we walked in the door.  He had an intuitive sense of where everything was, almost immediately was walking around our home like he owned the place, and — best of all — has been so very happy.  It hadn’t occurred to us that Idan actually missed home because we thought he’d surely forget the place after spending 6 months away at such a young age.  But no, he is literally singing and dancing all day, sleeping peacefully at night, and waking up with a huge smile.  I can’t help but feel that Idan senses that he is “home.”

For the next several weeks, we will continue with the weekly clinical visit, labs, and continue to be on high guard for temperatures above 100.3.  Idan may be many weeks out from transplant, but he still has a long way to go before he is back to his “status quo.”  So we are continuing to follow the isolation protocols that we did in Seattle.  To our many friends in NYC who are hoping to see us now that we are back, we appreciate your patience and understanding.

9 comments for “Day 144: If there’s a will, shouldn’t there be a way?

  1. Erika
    March 17, 2014 at 12:13 am

    Hi guys, I’m so sorry your homecoming has been marred by this setback. We are rooting for you always. Love Erika, Yaniv and Yarden

  2. March 17, 2014 at 6:42 am

    I read the long list of information you have provided. You can unfortunately write your own book with your experiences….I will still say, Akiva, that in my 25 or so years as a patient of my healer, and always having been medically in tune, I can say that so many miracles have occured in this office and doctors continue to say, “I don’t understand how this miracle occured.” Nothing is considered incurable here, including pancreatic cancers, or hepatitis C. Physicians come for their own health and send others here. I have very little effects from my brain tumor because of my healer…I am asking please for you to consider this again. The benefits of seeing him, which I will cover, far outweigh any risks of travel…Please, Akivah..By the way, I ordered all the toys for sweet Idan. So happy he sounds so Happy…It’s wonderful. Now for his immune system, let’s get it better….Hoping to hear from you….and will need your address too….
    Kol Tuv,

  3. Linda Wachtel
    March 17, 2014 at 9:42 am

    A day at a time my friends…Idan is resilient and so are you….glad you are in the comfort of home with the support of your family..xoxo

  4. Emily Murphy Mom of Todd
    March 18, 2014 at 6:06 am

    So sorry to hear this. Praying for this beautiful child and his amazing parents.

  5. Gal
    March 26, 2014 at 7:53 pm

    Guys it’s been a while since you posted. I really hope that things are going well but either way I want you to know I think of Idan every day and pray for him and drink for him every time I get a chance to pray or drink.

    • Admin
      March 26, 2014 at 8:10 pm

      Thanks for checking in and for your thoughts. We will write an update soon. Little guy has been keeping us busy 🙂 over all doing ok even though we added a third immunosupresent. Monitoring him closely for any issues and hope he stays infection free. Hope this new drug can save his declining graft.

      • Gal
        March 26, 2014 at 8:56 pm

        Thanks for replying so quickly! I know it must be difficult. There is def no pressure to update anything. I have been following idan very closely since I heard about him, for the last 6-8 months. have a daughter about his age and it just makes me think about him a lot. if there’s anything I can do my wife and I would love to help. also we’re New Yorkers. Not sure if idan can play w other kids but if he can we could do a play date.. especially if he’s into being bilingual!

        • Admin
          March 30, 2014 at 2:04 pm

          Hi Gal. Thanks for following Idan’s story and for your support. It has meant so much to Amanda and I over the past year to have the support from so many people that we have never met and knowing that they are all in Idan’s corner and rooting for him has helped us get through the tough days. Once Idan’s immune system is strong enough and the doctors clear us for play dates we would very much like to meet up with you guys. Idan is going to need a lot of catching up to do with kids his age 🙂
          In the mean time we are very glad to connect as well (will look for you and FB/Linkedin). Best, Akiva.

          • Gal Sivan
            March 30, 2014 at 2:45 pm

            Thanks Akiva. Def look me up. I heard about Idan through Matan Ariel. I know you have a lot of supporters, but if there’s anything I can do please let me know.

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