Month: March 2014

We wanted to share with you a quick update, and a little story that goes back to last summer that has touched our hearts.

First and foremost, Idan is doing well, still looking for ways to get into trouble while keeping us all laughing. We started a third immunosuppressant, which we hope will save the graft from slipping any further. His immune system is now extremely weak, and this means more isolation and more precautions necessary to keep him safe. Thankfully, the drug does not have many side effects and Idan seems to be tolerating it well so far. If it does not work (i.e., the chimerism keeps going down at the same rate), then we will come off the drug after 2 months. If the chimerism holds, then we’ll stay on the drug until it seems his graft has stabilized, which could be several months to a couple years. As they say, there are no guarantees in life, and there are no guarantees this drug will save Idan’s graft, but we’re not ready to give up just yet. In the meantime, we’ve been keeping busy with weekly doctor visits and blood draws and making sure Idan gets to make up for lost time with his grandparents, aunts and uncles.

And now, for our story. After Idan was hospitalized in April, you may recall that we did everything we could do to find out everything we could about his disease and raise money for the astronomical medical expenses down the road. This included a newspaper article in the New York Daily News, among other things. Unbeknownst to us, when our doorman Gus saw the article in the paper, he clipped it and made a bunch of photocopies and distributed them to all of our neighbors. He wanted everyone to help keep Idan safe and stay off the elevator if they were sick and they saw us inside, but mostly, Gus knew we’d need friends in the building looking out for us. We only found out when we saw cards slipped under our door, donations made on our Youcaring site, neighbors frequently asked us how we were doing, and offered to check the mail and bring in packages for us while we were away. When we did find out, we were so touched and caught off guard by the random act of kindness, and all the other random acts of kindness that followed.

Well, this single gesture carried further than we thought. Last week, we were greeted in front of the elevator by our neighbor Gloria. She was deep in a conversation with the doorman when we first walked in, but she glanced in our direction and immediately her eyes welled with tears. We hadn’t seen her since last summer, but, then, we hadn’t exchanged more than a couple pleasantries in the past, so it was a bit surprising at first that she was so emotional. She approached us and joyously exclaimed, “You’re home! You’re home! I’m so glad you are home and he is here, sitting in his stroller, looking so healthy!” It turns out, ever since the day Gus left the copy of the Daily News article in her mailbox months ago, Gloria has been praying daily for Idan. She tells us her family members and friends in Puerto Rico are also praying for him and constantly ask about him. His picture is hanging in her apartment and she thinks of him often.

Later that week, we bumped into our mailman, who also was very excited to see us home. He said there were others in the building asking about us, and to know that we had a lot of people looking out for our little boy.

Many of you know that I grew up in Manhattan and have spent my whole life living in apartment buildings. Despite having dozens of “neighbors” in Manhattan, it is almost unheard of to act neighborly. So I must believe it is something about Idan that brings out the very best in people, and that his cry has reverberated around our building and around the world for a reason. We feel very blessed to know these wonderful people, to live just a few doors down, and know that Idan is better and stronger for it.

The 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.

We’ve been waiting to say this for a long time, so here goes…. “We’re baa—aack!” – in NYC, that is.  After a dreadful and exhausting flight back, we have our feet on solid ground.  As we start to put the pieces of our apartment (and life) back together, we find ourselves still strong and still full of fight.  We can thank the incredible residents of Seattle for that.  Entire communities welcomed us with open arms and made us feel like home.  We owe so much to so many.  Seattle, this post is for you.

When we brought our son out here for medical treatment last September, we did it knowing full well that we were leaving our home and everything behind for at least six months during what would prove to be the most difficult months of our lives.  We knew a handful of people through friends and family, and only a couple of people did we know beyond a name and contact information.  Today, we are proud to say we know so many of you, and are very honored and humbled by the way you embraced our family and made us feel like home.

The members of this community have gone to great lengths to make our stay here not only palatable, but surprisingly enjoyable. Here are just a few of the ways you have brightened our spirits and given us the strength to help our son thrive through his bone marrow transplant:

You picked us up from the airport in the middle of the night when we first arrived.

You opened your home to us — despite never having met us — so that we could have time to find a more permanent place to stay.

You lent your car to us, one of you for two weeks, the other for six months, without any hesitation.

You organized a toy drive for Idan so that he could enjoy every minute of his day that he wasn’t getting probed or poked by someone.

You donated linens, dishes, pots, pans, appliances, and even furniture — so much so that our new apartment was fully stocked in a matter of days.

You donated gift cards to Target, QFC, Safeway, gas stations, and more, so that we would be able to cover our shopping expenses.

You went to Target and other stores to pick up much needed household items for us.

You mobilized so many others in your community to take Idan up as a cause and to make sure that he never wanted for anything.

You prepared and delivered meals three times a week for the past five months, and made sure that every Shabbat we had a challah on the table.

Your children sent Idan cards, handmade gifts, and posters to hang on the walls that he (and we) will forever treasure.

You displayed Idan’s artwork in your school hallway and made him feel so proud of himself, a feeling that not too many toddlers get to experience.

You brought us treats from New York when you were traveling to and from Seattle.

You visited us in the hospital when Idan was in-patient for several weeks and gave us much-needed breaks.

You visited us in our home, took us out for dinner, and have been shoulders to lean on – and sometimes cry on.

You helped pack up and clear out our apartment when it was time to go.

You have prayed for Idan, sent us your well wishes and words of support with every generous gesture.

All in all, you have been the very foundation that we have stood on, and behind the scenes you have been fighting for Idan as part of his army.  For that, we can only say thank you, and hope that some day, some how, we can show the same generosity to you and other families that has been shown to us.

Thank you.

Love,

Amanda, Akiva, and Idan Zablocki