Idan, my hero

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

It’s a good thing that writing to you all is so therapeutic, because today was a doozy!  It seems that the past few weeks have all been a bit of a downward slope, and lately we’ve been doing everything we can to can catch our fall.  Since the poor T-cell chimerism results came back, we’ve been very stressed over the next steps and what the future brings.  As if to distract us from worrying too much about the future, we have a new medical mystery to solve.

Although we spent the last few days worrying about Idan’s temperature, for the exception of the first hour we arrived to the hospital, it has been very low-grade.  For that reason, we nearly lost our patience stewing in the hospital for so long with Idan having mostly normal (even if a bit high) temperatures.  Every time his temperature reaches 37.4 degrees, they have to recheck the temperature every half hour, no matter the time of day or night, until it goes back down.  38.3 is considered a fever, and once he has a fever, we must stay in the hospital for at least 48 hours after the fever breaks (i.e., his temperature goes below 38.3).  The past few days we have been hovering around the 37.4 mark, resulting in very frequent vitals around the clock, and, once a day, just when we think we’re in the clear, it reaches 38.4 and holds there for about half an hour before it drops back down, and we start the clock all over again.  So this morning during rounds we discussed with the doctors the possibility of going home today, watching his temperature, and if it spiked, we would bring him back in.  While we are all anxious to get Idan back to a normal routine and allow him to rest, however, the fact remains that we are no closer to determining the root cause of Idan’s temperature.

All tests have come back negative thus far, so they have ruled out most viruses and bacterial infections (or at least those capable of testing for).  To complicate things, Idan needed a blood transfusion today (which, in and of itself, is par for course for post-transplant), and during the transfusion his temperature went up and he began to develop a rash all over his body.  It is possible that he was having a reaction to the blood products, but those tests also came back negative.  The rash seems to have subsided for the most part.  A couple hours later, Idan was unable to keep down his food, resulting in a cleaning crew having to mop the entire floor.  Now, it looks more like the low-grade fevers and rash and vomiting might be GvHD, but not all of his symptoms are consistent with that either.

With the aid of some anti-nausea and anti-itching meds, Idan is sleeping sweetly now.  We are hoping against hope that all of this is an acute mild GvHD caused by the onset of donor T-cell engraftment (the cells that have eluded us thus far).  But we are also worried that something else is brewing, and after our experience in April with Idan’s pneumonia, we are a bit traumatized by medical mysteries.

We hope to have more answers over the course of the next few days.  In the meantime, we are very blessed to have the company of Akiva’s brother and sister-in-law who have traveled across the country, baby in tow, to introduce us and Idan to the newest and tiniest addition to the Zablocki family (seriously, Idan suddenly looks like a giant!).  In addition, since arriving at the hospital, we’ve received so many sweet notes of encouragement and more ways to keep Idani happy and entertained while he’s couped up all day.  On another wonderfully positive note, our donor has agreed to donate additional cells for Idan – on December 23rd, no less!  We have tentatively scheduled the DLI for December 24th, knowing that the DLI may not be an option by then, but also hoping that it won’t be necessary if Idan’s T-cells engraft.  It is such a testament to the character of Idan’s donor that he has dropped everything on only a week’s notice and only a couple days before one of the most celebrated holidays of the year to come to Idan’s rescue.  We hope to one day meet this incredible man!

As always, we are uplifted by your prayers and encouragement, and funnel all of that positive energy into everything we do for Idan.  Thank you and lots of love to you all.