Author: Admin

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

After a very early start (5 a.m. to be exact), skipping breakfast and an anxious couple hours of waiting around, we are very happy to say that Idan’s central line is finally out!  Although he needed to be sedated for the procedure, they removed it in a matter of minutes.  The line has come to represent so many of the challenges Idan has been put through in the past year, so this was an emotional day for all of us.

When his line was place back in mid-October, it was the first real procedure that would mark the beginning of transplant, and we were set to be admitted the next day to start chemo. It was a very long day back then, as the surgery got pushed off from 10 a.m. to 3:30 p.m., and we all had to entertain a fasting and very cranky Idan for hours only to have him taken away to be intubated and have a scary foreign object placed in his chest. Idan woke up then very groggy, and his line did not stop bleeding for three days. The line came to represent all our fears and guilt about what Idan is going through and we could not wait for the day it would come out.

Over the next 4 1/2 months, however, the line would come very much in handy as they could take blood and give meds without poking or hurting Idan. Over 100 blood draws, 4 blood transfusions, 3 platelet transfusions,  several IVIG transfusions, 5 days of chemo, countless doses of antibiotics and other meds as well as immunosuppressants went in and out of that line. And, of course, two large bags of Idan’s donor’s bone marrow went in through that line. Idan got used to and even began enjoying the routine of waking up at 7 a.m. every morning and having us flush his line with saline syringes and heparin, and he quickly learned to sit very still for the 30 minutes during his complicated and tedious dressing change every week. He knew that he was not allowed to pull or touch the lines, and made sure to shake his head and say “No No No” every time he momentarily forgot and decided to yank on them anyway. The line became an extension of himself, and I am sure that in some way he will miss it. But we will not.  The line posed a constant risk of infection, was a nuisance come bath time and play time, and was an incessant reminder of all that Idan has bravely withstood with a smile on his face but that no little boy should ever have to.  Good riddance!!!!

When we left the hospital, the sun was shining bright in Seattle.  Back at home, Idan was able to play without us constantly bothering him to make sure dangling lines were tucked away.  Best of all, now that Idan’s line is out, we can start making plans for our return trip home to New York.  All in all, it was a great day.

As for Idan’s rash, we have been able to slowly start weaning the steroids while keeping the rash at bay.  We hope the trend continues because the steroids have made sleep all but impossible. Regardless, even if we only dream of uninterrupted sleep, we will all be sleeping “easier” knowing that we are rid of Idan’s central line.