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.

Let’s just say it has not been our week.  After receiving the news that Idan’s T-cells aren’t engrafting as we all hoped they would, we are now back in the hospital because Idan spiked a fever today.  There are a number of things that can cause a fever post-transplant.  It can range from a virus, to an infection, to GvHD.  And sometimes, the cause remains unknown.  For now, we wait to see what the blood tests show and if there’s any other symptoms.  

We are probably going to be in the hospital for the next two to three days at least.  They have to wait until the fever breaks (i.e., it stays below 100.3 for at least 24 hours and no tylenol needed), and 48 hours of “negative” blood work (no infections in his central line).  In the meantime, Idan has received a few visits from his old friends, and the physical therapist even dropped off the floor mat he loved playing on so much the last time.  Idan, as per usual, is telling jokes to all the nurses and entertaining all who enter his room.  Of course it’s eerie to be walking these halls again, and especially eerie that they put us in a room that is the mirror image of our old room.  It all feels a bit like a bad dream, but we hope to be out of here soon.

In less than a week, the chimerism test will be repeated and we will find out whether the DLI is an option.  Let’s hope our luck turns around by then!

Idan was too busy catching up on the latest celeb gossip to be bothered by his test results.

“Fear is the mind killer.”  It is one of the first things Akiva taught me when we first met.  Today, that phrase repeats itself over and over in our heads as we received some disturbing news.  Idan is showing early signs of rejection.  The chimerism test that was inconclusive two weeks ago has shown a drop in donor T-cells.  While all other cell lines remain mostly or fully donor, it is likely that these cell lines would be lost if he loses the remaining donor T-cells.  There is a chance the donor T-cells will come up, but our doctors have consulted every expert in the world on transplanting Hyper IgM, and the consensus seems to be that this is an unusual case in a disease that is particularly difficult to transplant.

So tonight, we are drilling down on what our options are.  The first option is to wait and see what happens, but you all know us too well for that.  The second option (assuming it is available) is a donor lymphocyte infusion (a “DLI”).  We are strongly considering that as it is basically an infusion of the donor’s T-cells that gives a boost and helps give them an edge in this battle over space in Idan’s marrow.  Unfortunately, given the fact that the holidays are right around the corner, and Idan’s counts dropped precipitously in the matter of a couple weeks, we may run out of time before we can get the donor’s T-cells.  The DLI comes with increased risk of GvHD, but compared to the harm of having to do a second bone marrow transplant, it may be our best shot at giving Idan a chance at a long and healthy life.  However, if the donor is unwilling or unavailable, the DLI is not an option.  And if the donor cells drop below 5%, the DLI is not an option.  There are a few cases here and there of T-cells coming up over the course of a few months, even if they drop to zero, so a few of the doctors are hopeful (but not quite optimistic) that the counts eventually go up.  If Idan’s T-cells do go up, the DLI may not be necessary, but only time will tell.

For now, we have chosen to try the DLI should it be both available and necessary in two weeks.  If we wait and see, we risk losing all of the T-cells, and the transplant would be a failure since those are the cells we need to replace in order to cure Idan.  We are still scratching our heads how, of all the cell lines to come back with such fervor, it is Idan’s defective T-cells that are most stubborn.  But no one said this would be easy.  We repeat the chimerism test on December 16th, and go from there.

So, after an emotional night and a new plan of action, Akiva and I are preparing ourselves for battle again.  We’re sorting our way through the terror, and forging forward.  Fear is the mind killer.  So, instead, we dare to hope.  We hope that, with the strength of an army and with the love of his parents and family, Idan will be cured.

Dear Idan’s Army,

It’s been a while since we last checked in with you all.  We wanted to thank you again for all your support, and let you know how everything has been going.

After three weeks of pre-transplant tests, we checked into Seattle Children’s Hospital on Wednesday, October 16th, for Idan’s bone marrow transplant.  Idan received five days of chemotherapy and handled it like a champ.  He received his new bone marrow through an IV infusion on October 23rd, and was in the hospital for several weeks.  We were discharged on Tuesday, November 19th.  Since then we have spent most of our days going back and forth to the outpatient clinic for frequent follow up visits and occasional “scares” (issues with the central line, stomach issues, etc.), but all in all, Idan is doing very well. He ate, laughed, and played right through transplant and continues to thrive outside the hospital.

We expect to be in Seattle for at least two more months for continued close follow-up care, both to monitor Idan’s new immune system, and to make sure we are aggressively treating any signs of infection, viruses, or GvHD (graft v. host disease). It is still too early to know whether the donor cells will make a permanent home in Idan’s bone marrow, but by Day 100 (100 days post-transplant), we should have a good idea whether or not the transplant was a success.  Regardless, it will be at least a year until his immune system is fully functioning.  Until then, we continue to follow the same strict protocols to keep him away from germs and pollutants so he remains healthy.

On a very positive note, with your help and support, we have reached our fundraising goal!  We are relieved to be able to focus entirely on Idan’s health and well being, and are tremendously grateful to all of you who have donated and encouraged your friends and family to donate as well.  So many of the donations came from complete strangers, but you are not strangers anymore.  You are all part of this fight to save Idan’s life, and you have all made a huge difference in his quality of life and care.  Thank you.

Although our fundraising page on www.youcaring.com/fundraiseforidan is still online, we have moved all updates to our blog, www.idanmyhero.com, and our Facebook page, www.facebook.com/helpfight4idan.

Lots of love,

Amanda, Akiva & Idan