Month: September 2013

“Walk down this hall, then take a left and take the Frog elevator up to 7. Take a right and take the Bear elevator up to 8, and you’ll get to where you need to go.” Akiva and I said thank you and started wheeling Idan down the hall.

Vibrant colors and shapes lined the hallways, and Idan leaned forward in his stroller and pointed to each, remarking “a-duh!” at the pictures. Akiva and I smiled down at him, sharing in his wonder.

When we got to the 8th floor, we were quickly reminded of why we were here. Children with bald little heads, faces puffy from steroids, and tubes taped from their nose around their face, played and ran around the floor. We checked in for Idan’s echocardiogram and EKG tests – two of the many tests that would be performed before his bone marrow transplant – and sat down, knowing that Idan would one day be just like these children. Nothing can really prepare you as a parent for that feeling when you know your child is sick.

That thought sometimes haunts me – my child is sick. I remember when Idan was six months old, sitting in a waiting room at a hematology clinic to get Idan tested for a bleeding disorder. When he was only a few days old, he had trouble healing after a small cut. Nothing life-threatening of course, but it was enough to raise our pediatrician’s eyebrow and say, why don’t you go to a hematologist when he’s a bit older to rule anything out? I remember sitting there that day, embarrassed and uncomfortable. Here I was, a mom to a beautiful blabbering and healthy little boy, sitting amongst parents with really sick children. I felt guilty for sitting there, and guilty for taking up a seat. My son was fine.

Two months later, we again brought a beautiful blabbering and healthy little boy into another hospital waiting room – this time the ER. He was breathing quickly, but otherwise seemed fine. We were brought directly into an examination room, and were sitting around waiting for a doctor to examine Idan, when a lovely young lady came to the room holding a quilt and pillow made by schoolchildren for sick kids. I felt guilty for sitting there, and silly for accepting that thoughtful but unnecessary gift. My son was fine.

Since then, we’ve discovered that Idan is not fine. In fact, he is quite sick, and requires an invasive, risky, and prolonged procedure to save his life. My son is sick. And since then, we have sat in countless waiting rooms, and received the lending hand of hundreds of strangers. Still, sitting in that waiting room for Idan’s echocardiogram and EKG, surrounded by these sick children, part of me longed for the time when I felt that my beautiful blabbering happy little boy didn’t belong there. Now, I know he does, and there’s nothing that could have prepared me for how that would feel.

Yesterday was the third day of testing.  It was a long, difficult day (hence why I am only getting to writing about it now).

We started with the bone marrow aspiration at 11:15.  During this procedure, a sample of Idan’s bone marrow was extracted from his back bone to use as a base line for when they test to see if the transplant worked a couple months from now.

Idan was required to fast all morning before the procedure, so he skipped his breakfast.  We spent most of the morning trying to distract him from this fact, but by the time we got to the hospital, he was feeling tired, hungry and cranky.  In the procedure room, it took two nurses and both of usto put in the IV for the anesthesia, and he cried so hard during this process he lost his voice.  But he calmed down as soon as it was over, and nuzzled in Akiva’s shoulder until they came for us to move to the procedure room.  We were then taken to a small room with a very tiny bed.  The anesthesiologist administered the sedative and some pain medication, and Idan fell asleep instantaneously.  When Akiva laid Idan’s heavy head down on the bed, and everyone started rushing around him to get the procedure started, for a moment it felt like we were all back in the ICU, and a flood of memories returned.  We were told to step out into the recovery room, and it took everything I had to keep it together.  The procedure took all of a few minutes, and when he woke up from the anesthetic, Idan was his usual smiling self.

We took a break to feed him (and then ourselves), and then went down to the clinic to draw his blood.  Luckily, the nurses had the forethought to leave in the IV so he didn’t have to be poked twice.  They must have taken a pint of blood from him – so many tests to run before transplant.  He shed a few tears, but overall was calm and even a little playful while the nurses drew his blood.

After a traumatic day for all of us, we spent the late afternoon basking in sunshine at a beautiful park near the lake.  Idan saw his first big boats, and quickly forgot the earlier ordeal.  We are glad to be in Seattle, which we are falling in love with, if only for the fact that after a long difficult day, the sights of the city always bring a smile to Idan’s beautiful face.

Today was Idan’s second day of pre-transplant testing and appointments.  We had the dental exam, a conference with one of the transplant doctors, and a conference with the nutritionist.  Idan, as per usual, was ridiculously cute the entire day.  Laughing, giggling, and entertaining all the doctors (except of course when that dentist wanted to stick his fingers in Idan’s mouth – he did not like that one at all…).  Today involved much less poking and prodding, and much more talking.  Much easier on Idan, but still a long day.

The good news is that Idan’s teeth and nutrition both looked great, and we’ve gotten the thumbs up to continue what we’re doing to keep him healthy and safe until transplant.  The other good news is that the transplant doctor sounded very confident about the chemotherapy and overall conditioning regimen that Seattle is using as part of its clinical trial.  The data that they have collected so far shows significantly higher survival and cure rates using this protocol, and much fewer severe side effects.  We especially liked this doctor because her eyes literally lit up when she was talking about all the potential benefits of this protocol, and how her team is looking to influence doctors around the country (and world) to start using the same fine-tuned protocol.  We are right there with her.  It is very exciting to be part of such a promising treatment, and if your son is going to go through such a long and difficult ordeal as a bone marrow transplant, it helps to know that his experience might be used to help save lives all over the world.  Idan is definitely our hero.

In between our appointments, we had yet another surprise from Zipcar!  This time from the Seattle office, who showered us with gift cards for transportation and dinner at University Village, Zipcar swag, and – best of all – a handwritten card from the Zipcar employees with a picture of them all doing the Idan-Do!!  Apparently, ever since Akiva called back in June to explain why he had to downgrade his membership, the New York and Seattle office have been working together to see how they can cheer us up and make our stay in Seattle easier.  Lots of love for Zipcar from the Zablocki family!

After the appointments today, we walked around in University Village, a very charming outdoor shopping area in the center of the city.  Idan missed his afternoon nap because he was just too happy to be out and about.  The sun came out in time for our stroll, and overall it was a pretty good day.

It’s been two days since we arrived in Seattle, and we wanted to give you all an update about how things are going so far.

First, we have to thank the very sweet family that is hosting us this week while we get acclimated.  They have been absolutely amazing and have tolerated all of our boxes and craziness very well.  In addition, we have to thank the dozens and dozens of volunteers that have been quietly coordinating a toy drive, meals, apartment hunt, and even a car for us during our stay in Seattle.  The community here has not only welcomed us, but showered us with support at every turn, and for that we will be forever grateful.

Idan is doing well, but still recovering from the change in environment.  On Saturday night, when we pulled out of a little airport in Teterboro, NJ, Idan woke up just in time to enjoy his very first adventure since he got sick last April.  After being cooped up in his house or stroller for the last several months, his whole face lit up when we stepped onto the plane.  It was a very special moment, and thankfully one absent of germs (our very sweet host even voluntarily wore a mask during the flight!).

The next two days have been a bit rough for him though.  It is a completely new environment, and he does not entirely understand why he is away from his home.  He is not quite his usual playful self, and definitely feels more insecure.  But he is slowly getting used to all of the changes, and we are trying to get a routine down quickly so he will have an easier time adjusting.

Today, we had our very first set of appointments before transplant.  This included a tour of the out-patient facility, introductions tomany of the nursing staff that will soon become old friends, a physical examination, and blood work.  Tomorrow, we meet with the transplant doctors to go over all the details.  Highlights of the day included the bottle forgotten at the house and mad dash to find a new one in time for his next appointment, chasing napkins and other items blown down a street soon after sitting down to have a quick bite long past lunchtime, and Idan’s entire urine sample getting dumped all over mommy’s lap.  But Idan was a total champ and smiled and flirted his way through the day, crying only when his blood was drawn (but, really, who likes that?).

The next week or so willbe packed tight with tests, including but not limited to a bone marrow aspiration, dental exam, CT scan, EKG, echocardiogram, more blood work, nasal swabs, and the like.  It looks like our admit day to the hospital is not until October 16th or so, but we are told that the schedule may change again.

Back home in NYC, a few close friends of ours threw a rooftop fundraiser and raised $2,000 for Idan’s cause!  We hear it was a great turnout and we are so touched by their support.

Thank you all for keeping Idan in your thoughts and prayers, and all that you have done for our family in the past few months.  We are at the very beginning of the daunting second leg of our journey, but are glad tos’ have all of you cheering us on.

All our love,

Amanda, Akiva & Idan

It seems we have been saying our goodbyes for several weeks now.  First it was the tearful goodbye to my colleagues at work, who organized a send-off party on my last day.  About 30 of them crowded in the kitchen area of our beautiful 30 Rockefeller Plaza office, raising their glass and toasting to “Team Idan.”  Then, it was the tearful goodbye to Ashley and our other close friends in New York that have helped distract, entertain, and encourage us through this entire ordeal.  This was soon followed by the tearful goodbye to Akiva’s parents who flew in from Israel a few weeks ago.  Yesterday, it was the tearful goodbye to Aviva, my very pregnant sister-in-law, who silently agreed how painful it is that we won’t be there for the birth of our little nephew.  Today, it was goodbye to my siblings, my parents, our constant sources of strength.  And it was goodbye to the little life we have created for our family.  The play area (a.k.a. “fort”) that we created for Idan in the livingroom.  Our blue rocking chair where Idan falls asleep in our arms.  Idan’s tub, which he will outgrow by the time we return.  Idan’s favorite toys that he likes to snuggle with on lazy mornings.  Our home.   A tearful goodbye, indeed.

We said goodbye to everything and everyone we know and love and jetted out to Seattle today.  These goodbyes were tearful because we do not know what the future holds.  How this journey will change our course.   Tonight, as we sit on this luxurious jet and speak with its humble and gracious host, we are reminded that we may be saying goodbye to everything we know, but a miracle is just off the horizon.  And after that miracle happens, we will be back.

For the last week we have been packing up our home on two fronts: packing for a 6 month stay in Seattle for Idan’s transplant and packing up our apartment for subletting. On the first front it is really out of control as it turns out that besides the fact that Amanda and I are pack-rats, it turns out that 14 month old boys travel like pop stars and have a ton of stuff. Not to mention all the meds and infusions we need to take with us for the first two weeks of tests before he gets admitted to Seattle Children’s Hospital. And then there is a whole bag just for his food and bottles for the first 24-48 hours until we can buy more. We have been so fortunate to have so much support from family and friends both in NY and in Seattle. For the first few weeks before we settle in at the hospital and in the Ronald McDonald House we are staying with the family of some friends from undergraduate. They have been so supportive and we have been sending over stuff in advance that Idan will need for the first few weeks. Plus we have hundreds of volunteers in Seattle being coordinated by a very nice women from the community that are already planning meals, toys, and even a car for us for our stay. On our home front our families have been been here to watch Idan while we pack and to pack up anything we missed in our home after we leave. We leave tonight on a private G5 Jet with a very kind man that has so generously agreed to help Idan get to Seattle safely for the transplant.

Right now we are doing Idan’s last SubQ Infusion of IGG before we leave and packing up the rest of the doses for our trip. If all goes well with the transplant, eventually we will be able to stop the infusions as we he be able to produce his own antibodies. By this time tomorrow, we will be in a new city, starting a new journey and a new life to Idan.