Month: December 2013

Day 70: Reflections Of A Year Unlike Any Other:

Idan last December

Idan last December

It’s hard to believe that there was a time when we weren’t fighting for Idan. When he was “well” and we were blissfully happy (read: ignorant). Last New Years Eve, Akiva and I popped open a bottle of champagne and toasted to our wonderful life with our incredible baby boy, only 5 months old at the time. He slept sweetly in the other room. None of us could have possibly comprehended how our world would be shaken over the course of the next year, and even now we shake our heads in shock.

End of yearFast forward to the end of March, when my mother asked if we noticed that Idan was breathing quickly that day. It was the last day he would play with his cousins Ryan and Brandon for an indefinite amount of time. And two weeks later, we were rushed to the hospital by ambulance to save his life. Little Idan spent three weeks in the pediatric ICU hooked up to a ventilator, unable to breathe on his own. A diagnosis of pneumocystis pneumonia would lead to an eventual diagnosis of X-Linked Hyper IgM, and our lives suddenly changed course.

The following months took us on a journey to find a cure, and led us to Seattle for a bone marrow transplant. We fought and won battles with the insurance company and, with your help, raised over $250,000 to pay for the mounting expenses and cover the cost of transplant. We were showered in warm wishes, prayers, and love from hundreds, if not thousands, of friends, family, and complete strangers. People the world over connected to us, to each other, all worried about Idan. In late September, after a last-minute scramble to find safe transport to Seattle, we were blessed by the kindness of a humble man who shared his private jet to the west coast with us, and we were welcomed into the home of a wonderful family for the weeks of pre-transplant testing. We spent the latter half of October and most of November in the hospital for Idan’s bone marrow transplant, and have been in and out of the hospital and out-patient clinic ever since. All in a year’s work.

For the past several months, we’ve been living in a suspended reality of sorts. We’ve set up a temporary home here in Seattle, and we have been fortunate enough to have family visit frequently. By some miracle, Idan has thrived. In one year, he has gone from barely sitting up to full-on walking and talking, despite every obstacle that has threatened to throw him off course. Neither the ventilator, the isolation from other children and crowds, the multitude of x-rays, blood draws, and other tests, the chemotherapy, the bone marrow transplant, being tethered to Johnny Five for hours and days on end, living in the hospital for over a month on two separate occasions, dozens of medications he takes every day, nor the constant fussing over him by his worried parents have slowed him down. Not. One. Bit.

Today, as we reflect on this past year, although we may be sad for all that has happened and we mourn the many ways Idan has been deprived of a normal childhood, our hearts are full with love and pride when we think of our little superhero. Idan has never wavered, and forges forward, assuring us all will be okay in the year to come. We have high hopes for this year, and we hope and pray that it brings the ever-elusive cure we have been waiting for. We hope this year Idan will not have to endure more chemotherapy or another bone marrow transplant. We hope instead that his donor T-cells will grow and multiply and make a permanent home in his marrow. We hope this year Idan can go back to playing with his cousins, can visit his grandparents, aunts, and uncles, can go to the playground and play with children, without fear of catching a virus. We hope we can go back home to New York. We hope, we hope. In the meantime, we are enjoying every second of isolation with our little boy, who thankfully is a lively, entertaining, and delicious companion.

May all of you have a happy, healthy, and wonderful new year. Thank you for all your support!

All our love,

Amanda, Akiva & Idani

Day 69: Quality Time With Family

From Facebook:

Day 63: DLI went smoothly, hoping for a miracle!

photo 1As with many of the treatments Idan has received in the past, the actual DLI was rather anti-climactic.  The entire amount of donor T-cells infused fit into one syringe.  It took all of about 6 minutes to push it through, and we walked out of the clinic about 45 minutes later.  But, like all of the other treatments Idan has received in the past, the real risks and rewards happen far out, and we just have to wait and see.  In the next few weeks we hope the mature donor T-cells we infused help the small amount of donor T-cells set up a stronger presence in Idan’s bone marrow. The next chimerism test will be four weeks from now, and based on those results (and whether Idan tolerates these new cells) we will decide whether to move forward with additional DLI’s.  It may take a few DLI’s for the donor T-cells to really kick in, but we hope for the best and pray for a miracle so we can all go back to New York soon, fully cured.  Idan’s donor has generously given more than enough cells for as many DLI’s as needed.  We hope that wherever he is, he knows how incredible he is, and the amazing gift he has given to our 4 (1)

In addition to the DLI, this week has started on a positive note with a visit from Idan’s grandparents from Israel.  It was an emotional reunion, as the last time we saw them in person was in August, and we were preparing to leave for Idan’s transplant.  We remember saying goodbye quite vividly, the future seeming so uncertain.  No one could say for sure how Idan would handle the transplant, and we all knew that our lives would never be the same.  Yesterday, when Idan smiled cheerfully at his grandparents – faces familiar from Skype and FaceTime and many videos sent to entertain him on long days in the hospital – it dawned on us what a tremendous milestone we have reached in our journey.  Idan has survived a bone marrow transplant, and managed to thrive in so many ways.

So, as December comes to an end, the days are thankfully growing longer, and the future is looking brighter.  We hope that, like the barren trees of winter do every year without fail, Idan’s donor cells, too, will begin to blossom and grow fruitful over the course of the next few months.

To all those that are celebrating, have a merry Christmas, and a happy new year.

All our love,

Amanda, Akiva & Idan

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

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