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

This is the first Thanksgiving (and Chanukah) that Akiva and I have spent away from family, but that didn’t stop us from enjoying good food and company.  Two years ago, we joined the Jaffe side for a day of playing with all our nieces and nephews, and I had a little baby bump.  Last year, all three of us joined the Zablocki side for a feast at Akiva’s brother’s house, and baby Idan wore a cute (ehem, scary) black skeleton onesie that was a big hit with all his cousins.  This year, we Skype’d with everyone on both sides from Seattle, and even lit Chanukah candles together.  Later, Akiva and I enjoyed a surprise taste of home, quite literally, when the UPS delivery man knocked on our door carrying a large box from Zabar’s, our absolute favorite market in Manhattan.  Next year, we hope Idan has a brand new immune system that is fully functioning so he can sit at the Thanksgiving table, play with his cousins, and be spoiled on Chanukah by his grandparents and many aunts and uncles.  Until then, we are very grateful for modern technology!  We hope you all have been able to enjoy good food and time with your family this weekend, and wish you a very happy holiday season.

On the medical front, it’s been thirty-seven days since Idan’s transplant, yet we still have a ways to go.  As you may have read from our last post, the first chimerism test results (testing whether the new cells coming in are the donor’s or Idan’s) were inconclusive.  We are repeating the test on Monday, with the hopes of having results back by Friday.  In the meantime, we have spent much of the last ten days in the outpatient clinic.

There are 2-3 scheduled visits per week to draw blood and see the attending, mid-level provider, and nutritionist, and then there are the unscheduled visits, which are more frequent than we expected.  Just to give you an idea, one day, we had to rush to the clinic to change Idan’s dressing over his central line when his IV fluids leaked over the bandage.  We spent a Saturday morning in the hospital because there was a miscommunication with the pharmacy and we did not get enough IV fluids to give Idan the night before.  And, we spent most of yesterday at the clinic because Idan was having some stomach issues (we’ll spare you the details), which seem to have resolved once we took him off oral magnesium.  We must call and/or go into the clinic for every rash, elevated temperature (100.3 or above), vomiting or diarrhea, and at any sign of infection of the central line.  In a way, we are blessed to be so busy because it helps keep us from stewing over the chimerism test on Monday!

Nonetheless, Idan is still doing remarkably well, and is a very happy silly little boy.  It shocks us how amazingly well he has coped through the hospital stay, and now the almost daily visits to the outpatient clinic.  He makes the most of it, and smiles, laughs, and tells jokes the whole time.  This Thanksgiving, we are thankful for Idan’s army and all it has done to support and encourage us over the past several months, we are thankful for Idan’s continued health and, most of all, we are grateful for Idan’s spirit.  He brightens every day, no matter how bleak, and keeps us all smiling and laughing through it all.

We last wrote as we were preparing for discharge.  Since then, we received the results of the chimerism testing (discussed more below), and we spent four glorious days outside the hospital.  Most of those days were consumed with doctor appointments and transfusions, but we had very good company (Idan’s grandparents arrived on Friday) and we were able to enjoy all of Thursday and all of Saturday.

The results of the chimerism test were not quite what we had hoped for.  Instead of coming back 100% donor, some of Idan’s cells have stubbornly grown back, including his T-cells, which are the defective ones that need to be replaced.  They tested four lines of cells:  the Myeloid cells, the B-cells, the NK cells, and the T-cells.  The Myeloid cells came back at 100% donor, but the NK and B-cells were mixed, with 77% and 62% donor cells, respectively.  The most concerning is that the T-cells back at only 16% donor cells.  The doctors have assured us that this may just be a result of the conditioning protocol, and do not think that we should jump to the conclusion that he is rejecting the graft.  Apparently, with a Treosulfan protocol, it is not uncommon to see mixed chimerism (donor and host cells) at this early stage, and then to see the donor cells come in stronger a few weeks or months later.  They are happy with his myeloid, B-cell and NK cell engraftment, and will keep a close eye on the T-cells.  It may just be too soon to see donor T-cells, and we need to just sit and wait.  They are re-testing the chimerism again soon, and we should know more in a couple weeks.  If the donor T-cells go up, then it means that they are just taking a little longer to engraft.  If the donor cells go down, it means that he may be rejecting the graft.  We hope that the engraftment of the other cells will help kickstart the donor T-cells.

At first, when we heard these results, our hearts sank to the floor.  But after reading several articles and consulting a few experts on the immune system, we are more optimistic that this is just part of the process.  We have always known that the donor immune system would take at least a year to grow and stabilize, and that there would be many ups and downs along the way.  Hopefully, this is just a bump in the road!

Until we know for sure, we are focusing on the positive.  Idan is out of the hospital, has had an incredibly good time with his grandparents, and is still smiling and feeling good.  As I write, he is pushing a walker around the apartment, untethered from Johnny Five.  On Tuesday, we came home from the hospital to three large boxes filled with toys, necessities, gift cards, and warm notes and cards from many of my friends and colleagues from work.  A friend from home knit me a scarf, and another friend sent Idan a portable menorah and Chanukah presents.  Family and friends from near and far have called, Skyped, emailed, and traveled across the country, all to make sure we are okay.  The amount of kindness and support we have received is beyond anything we can fully comprehend.  It brings tears to our eyes and gives us hope that Idan is going to be okay.  We love you all and hope to be sharing better news next time.

Today, we have much to celebrate.  Idan has officially engrafted.  His ANC has been above 500 for four days now, and it has jumped to 1,030 this morning!  Since Idan is eating well and is on no pain meds, after over a month in the hospital, we can be discharged — today!

The last few days have been incredible.  The first step towards discharge was the ANC staying stable over 500.  Once that happened, we were able to switch Idan’s last remaining continuous IV med to oral, so he only has to be hooked up at night.  Finally, Idan is no longer tethered to Johnny Five!  He has much more freedom of movement (limited as it is in the hospital).  In addition, since his meds are all in the morning, late afternoon, and evening, we have several hours that Idan isn’t being bothered for anything.  We have our first taste of freedom.  They even gave us a “therapeutic pass” to leave the hospital for a few hours on

We still have a long road ahead of us.  In order for the transplant to be a cure, Idan needs to accept the donor cells.  We tested the percentage of his cells that are the donor’s this morning.  Those results should be back next week.  Even if it is 100% donor, there is a chance that Idan’s own immune system can come back.  So we wait and see.  Until then, we have another 75 days or so when Idan is at the highest risk for infections, viruses, etc., and when GvHD usually presents itself.  So even though we can leave the hospital, we must keep him very isolated for now.  His immune system will start to kick in around Day 180, and it will be an entire year before it is fully functioning.Sunday and Monday.  We visited IdaniWonderland (a.k.a. Idan’s playroom in our apartment a mile from the hospital), and Idan took a nap in his own bed.  These short excursions back to the house have been a much needed mental break for Akiva and I, and have given Idan a chance to slowly adjust to our new apartment here in Seattle.  Despite being in a hospital, this room has been home for him for over a month.

Nonetheless, we have a lot to be thankful for today.  Above all, Idan is leaving the hospital in much the same spirits he entered.  He still wakes up with a smile and shows us all of his funny faces.  He still manages to throw a ball across the room with the force of a much older child.  He still dances and still sings.  We owe a lot of that to all of you.  Idan went into this battle with an army behind him, and it has made all the difference.

Playing with stickers he received from a fan.

It’s been several days since our last update, and we wanted to let you know all is going very well!  Since we last wrote, Idan’s counts have went from 50 to 262!  We are more than halfway to 500, the magic number we need to exceed for two days before Idan can be discharged.  His rash is significantly better, and we hope it will disappear altogether.

The last few days have been a bit of a blur – in a good way.  Idan’s aunts Sabrina and Elisabeth came to visit, and we all had such a fun time.  They gave us much needed breaks throughout the weekend, including to run back home to get the apartment ready for Idan.  The IdaniWonderland is now filled with fun toys and the walls are all decorated.  We can’t wait to see his face when he gets to play untethered to Johnny Five (his IV stand) for the first time in over a month!  This room is a product of Team Idan.  So many of you have sent toys and wall decals to help make his stay in Seattle fun, and we’ve brought many of them to the hospital to entertain him while he’s hospitalized.  Thank you for bringing so many smiles to his beautiful face.

As we start to approach discharge, we’ve had some time to reflect on our stay here at Seattle Children’s Hospital.  It’s truly a place of healing.  The staff here are cheerful and extremely accommodating to crazy NYC parents, and the rooms are spacious, allowing for all sorts of play and activities.  Despite Seattle’s reputation for being a cloudy/rainy city, we’ve been fortunate to see many sunny days (and a few sun showers), and on those days we can see Lake Washington from our window.  Perhaps one of the most unexpected sources of healing has been the widescreen TV that is hooked up to the internet.  A “toy” that we initially thought would be more fun for us has actually become a wonderful way for Idan to keep in touch with his extended family.  Aunts, uncles, cousins and grandparents alike have sent Idan videos which we play off a private Youtube playlist on the big screen.  He excitedly dances along to grandparent’s nursery rhymes and his uncles’ lullaby’s, and sweetly listens to his aunts read his favorite books to him.  He especially squeals when he sees his cousins on the big screen.  When we chose Seattle Children’s Hospital, our main reason was the chemotherapy protocol, but looking back on this overwhelmingly positive experience, we’d choose Seattle again even if they were using the same chemo as every other hospital.