Author: Amanda

Peek-a-boo!

An Update:

It is now the afternoon of Day 4.  Since we last updated, Idan has had two very good days, and today is starting out well, too.  Idan is eating, playing, and after 10 days of refusing the bottle, finally showing signs he is ready to drink again.

Despite having several days of multiple chemotherapy drugs, being tied like a leash to an IV pole nearly 24 hours a day, constantly being prodded by nurses to check his vitals, and being pent up in the same room (albeit with a beautiful view) for the last 10 days, Idan continues to amaze and surprise us.  He is full of energy and light.  When we take a walk around the hall, he still perches forward in his stroller, excited to see the world (even if it is just a row of identical hospital rooms).  When we brush his teeth with a little sponge, he grabs it out of our hands and does it for us.  When he wakes up in the middle of the night, he sits up in his crib, reaches for us, and smiles when we come near.  It is a blessing to be in the hospital for a week and a half and see no signs that his personality has been affected.

Although we still cringe to think what the future might bring, we are thankful that he has gotten to this point without any severe toxicities, side effects, or infections, and we are thankful that we chose Seattle Children’s Hospital.  We hope and pray that we can continue to keep him safe and well, and that the donor’s stem cells are working their way towards Idan’s bone marrow as we speak.

Now, for Some Comic Relief, the Bloopers:

So, as you might imagine, two people sharing a small space can make for a reality TV show as it is, but add in lack of sleep, stress, and a toddler full of energy and you have the recipe for a sitcom.  We thought we’d share with you a few of our slapstick moments:

Making a Big Mess:  Akiva has this very large jug he likes to fill with ice coffee – all the way to the top.  It is one of those 32 oz nalgene bottles, I kid you not.  Anyway, every day when he brings it into the room, refilled, Idan goes crazy for it.  He reaches for it, tries to grab it, and protests when we take it away.  Thankfully, he is less interested in the iPhone now that he has found this jug.  If his Aba treasures it, so does Idan.  So one day, I am feeding Idan, and Idan excitedly reaches for something behind me.  I turn around to look, and before I knew it, Idan’s little fingers wormed their way over to the table that Akiva left his jug open.  As soon as I turned back around, the entire jug was all over the floor, along with about 32 oz of coffee!  The very next morning, this time Akiva is feeding Idan.  Now the jug has found its way into some other corner of the room, and once again, Akiva left it open (says Akiva, “I was drinking out of it!”).  Akiva asks me to pull another pair of pants for Idan from the closet as he had made a bit of a mess.  So I pull open the door, and next thing I know, I am standing once again in a puddle of 32 oz of coffee that was hidden underneath the closet door.  Later that day, Idan got his hands in the Rice Krispies bowl, which subsequently wound up all over the floor.  Needless to say, Akiva has finally learned to cap his jug, I am constantly paranoid I will spill a jug of coffee, and all three of us keep hearing Snap, Crackle, & Pop.

What Day is it Again? We all know how days start to melt together when you have no regular weekend.  So yesterday, on my night off, when I set my alarm for 6 a.m., I did not take into consideration the fact it was set to a “weekday” alarm.  In any event, when Akiva called at 8:30, I jumped out of bed, and rushed out of the house to the shuttle that goes from our apartment to the hospital.  When I arrived to the parking lot, it was practically empty, and the shuttle did not come on time.  Nor did it come ten minutes later.  I called the transportation services number three times, puzzled why no one was answering the phone.  Finally I decided to walk (we are only a mile away), and appreciated the exercise.  When I got to the hospital, Akiva was also puzzled why there was no shuttle.  Akiva also remarked how I missed rounds, but they were much smaller than usual, and everyone seemed casually dressed – how odd?  As if a lightbulb went off in our head, we suddenly put two-and-two together, realizing that the faulty alarm, the absent shuttle, the transportation services voicemail, the small rounds and casual clothes were all because everyone else in the world was enjoying their weekend.  Whoops.

Big gifts come in tiny packages.

We’ve never met you and know very little about you, nor are we allowed to for the next year.  What we do know is that you are a healthy 23 year-old man from somewhere in the United States.  You have been through half a dozen tests over the course of the past several months all to confirm you are indeed the best match for Idan.  Indeed, you are a 10/10 match and even have Idan’s blood type.  Your world has just collided with ours, and we must thank you for sending Idan the gift of life.

Around midnight last night, your stem cells arrived in two tiny packages, both labeled with Idan’s name.  When the nurses came into the room and showed us your cells to verify that the name on the packages was Idan’s, I felt a feeling that mothers rarely get to feel twice.  Seeing those tiny packages felt exactly like the feeling that rushed over me the moment Idan was first brought into my arms on the day he was born.  He was a newborn then, and in many ways he is a newborn now.  The gift of seeing your child’s future and all the hope it promised is the most wonderful gift you can receive.

Although the road ahead is long and will most undoubtedly be bumpy, the fact remains that you showed the most selfless kindness possible from a complete stranger.  Whoever you are, wherever you are, thank you.  Thank you for giving our child a second chance  at health and longevity.  Thank you for saving his life.

Anyone who knows me knows that I am a highly rational person.  Learning how things work, understanding processes, problem solving; these are my coping mechanisms.  But there’s a small part of me (inside all of us perhaps) that still believes – or is afraid not to believe – in jinxes, bad luck, superstition, and all that jazz.  The part of me that waits for the other shoe to drop.  I’ll give you an example.  One day, on my way home from work about seven months ago, I stepped off the subway and saw the sunset straight ahead.  In that moment (and I remember it clearly), I felt like I was the luckiest woman in the world.  I was enjoying my work and planning a huge event for the women’s group about issues immensely important to me and my female colleagues.  Better yet, I got to return home every night to my beautiful baby boy and darling husband who I love with all my heart.  But in the midst of that thought, before I even had time to enjoy it, I gulped and feared when the other shoe would drop.  And in April, only a couple weeks later, my beautiful baby boy was rushed to the hospital, and so began our journey.  I have thought back to that moment, where I thought I had it all, many many times since then.  Did I jinx myself by being happy and believing us to have it all?

Last night, my father said something to me that changed my entire perspective.  Idan has been feeling very well compared to your average chemo patient.  He has been energetic and happy, drawing with crayons for the first time, decorating his crib with stickers (really, I kid you not), and giggling like a maniac when we act silly with him.  And last night, I felt that fear again – when is the other shoe going to drop?  But, as though reading my mind, my father said to me, “I am so glad Idan has been through four days of chemo, and is still feeling great.  Every day he feels good is one day less that he has to suffer from all this.”  And suddenly it all clicked.  Every day he feels well is a blessing, no matter what tomorrow brings.  

And of course, last night Idan did have a terrible night, inconsolably crying, and barely getting any sleep.  He received his first dose of morphine to help with pain.  But I for one am feeling thankful that it took this long, and glad that no matter what tomorrow brings, Idan had at least four less days of feeling bad.

It’s been almost two days since we drove to the hospital to check in for Idan’s transplant.  As Akiva and I walked side by side down the hallway, wheeling Idan in his stroller down the hallway leading to the bone marrow transplant unit, I had a flashback from my childhood.  My twin Rachael and I were laughing and running up a hill at a national park called Craters of the Moon.  We gleefully climbed the mountain of volcanic soil, holding hands.  We must have been only 7 or 8 at the time.  When we got to the top of the hill, we were in awe of the beautiful view.  But as we turned to go back down the hill, we saw how steep it really was.  We nervously squeezed each other’s hand, and looked into each other’s eyes.  As if on cue, we both said, “I trust you with my life,” and headed slowly down the steep hill, one small foot in front of the other.  Walking with Akiva and Idan yesterday felt eerily similar.  We have gleefully and excitedly arrived at our destination, excited for what’s to come – Idan’s new immune system and all that it entails.  But the path forward is steep and downhill, and we have to hold on to each other tightly, tread slowly, and keep putting one foot in front of the other.

I won’t sugarcoat it; the last couple days have been very difficult.  As we mentioned in an earlier post, the placing of the central line was much later than anticipated.  It also was quite traumatic, as we found out that Idan kept bleeding from his central line for a while after it was placed.  They had to change the dressing multiple times, all before we were allowed to enter the room.  By the time I came to his bedside, the little guy was bent over, still choking back sobs.  He was still drowsy from the anesthesia, but he was scared and angry.  The next morning, we were admitted into the hospital and Idan was finally feeling more like himself.  Unfortunately, in the late afternoon, Idan began bleeding again from the central line site, and, although largely harmless, it was very difficult to control.  Several measures were taken to try to control the bleeding, but nothing was working.  In the meantime, Idan was poked and prodded many more times than planned in this effort to stop the bleeding, and he was extremely upset by it.  There is nothing harder than looking into your little boy’s eyes as he screams in pain and fear, returns a confused and hurt stare, and begs you to save him.  But Idan is strong and, thankfully, very forgiving, and even smiled at the very nurses who moments earlier were forcefully applying pressure to his wound.

After a mostly restless night, Idan returned to his usual self this morning.  Full of life, energy, and jokes, Idan laughed and played his way through the day, and we could not be more proud of him.  He manages to find joy in the smallest activities, from playing peek-a-boo from behind the bars of his crib, to practicing the new words he learned to say, like door, ball, car, and – of course – bamba (his favorite snack).

Tomorrow, we start the ATG, which is another form of immunosuppressant, but likely to cause the most severe side effects.  We have been told to expect that things will get a lot worse for our little one as the days go by.  ATG causes significant flu-like symptoms, among other things, which we will look out for tomorrow and through the next couple weeks.  The effects of the chemo may hit around the same time, so we’re glad Idan is such a strong, resilient little guy!

We are relieved another day of chemo is over, and will send an update again soon.  Thank you for all your support, prayers, and words of encouragement!

Akiva and I let out a deep breath today.  The results from Idan’s CT scan of his lungs and the ultrasound of his liver came back, and for the first time in what seems forever, we heard the word “normal.”

For those who have been following Idan’s story for the past few months, you may remember he had a severe case of pneumonia (called PCP) in April that wreaked considerable havoc on his little lungs, and his liver was inexplicably enlarged at the time as well.  We were told by the doctors it would be a very long time before his lungs fully recovered, as there was so much scarring that each cell of his lungs had to re-grow.  We were also told that the two most significant concerns and risk factors going into a bone marrow transplant for Idan’s disease are lung and liver problems.  Knowing that Idan’s liver and lungs are FINE means he is strong, has fully recovered from the event last spring, and is more than well enough for transplant.  We could not be more relieved.  As long as we can keep him from catching a cold, virus or infection in the next week, we will be admitted on Wednesday, October 16th.

With only a week to go until the transplant begins, we have settled into our new apartment that we will call home for then next few months, and Idan is loving his playroom.  We already received several gifts from strangers and friends to help entertain him and for that we are tremendously grateful.  If only we could bottle Idan’s sweet smiles, giggles, and squeals!

On that note, we want to especially thank the Seattle community that has taken us under their wing.  Members of several congregations in the city have contributed household items to help make our stay here easier, and we are very fortunate to be surrounded by such generous people.  I’ll share one example (of many) which has brought tears to my eyes.  We received a beautiful sheet and comforter set from a young woman who just had her bat mitzvah.  She told her mother she wanted to help our family with some of her bat mitzvah money, and insisted on picking out bedding herself, telling her mother that “Idan’s parents shouldn’t have to worry about picking this out, they are with Idan.”  Whoever you are, thank you.  Idan loves rolling around on top of the comforter in the morning before breakfast, and the bedspread instantly made our new bedroom feel cozy and warm.

All our love to all of you back home and around the country and world who have been cheering us on and giving us moral support!

It’s only Wednesday, and already we’re all feeling a bit exhausted.  Since we last updated you all, Idan has had a few more days of testing.  Last Friday, he had his echocardiogram and EKG.  Yesterday, he had a blood draw and we had conferences with the pharmacist, social worker, RN, and child life specialist.  Today, he had a CT scan, another echocardiogram, an infectious disease appointment, and a failed blood draw that we’ll have to repeat tomorrow.

Today was by far the most difficult day.

We woke up at the crack of dawn for the CT scan, and after another night of fasting, we brought Idan t the hospital at 7:30 in the morning.  He was a better sport about it than we were, smiling and playing all the way to the hospital.  We and Idan’s team decided that it would be easier on Idan if he was asleep for the CT scan, because it would mean less restraining during the scan and that we would also be able to easily finish the echocardiogram (which was halted last week when it became clear Idan was not happy with sitting still for so long), and place an IV that could be used for the blood draw in the afternoon.  The advantage with doing all this in one shot while Idan is asleep is obviously to avoid unnecessary trauma for the little guy.  Unfortunately, the sedative did not do its job very well, and Idan was awake (albeit a bit loopy) for it all.

So we had a very long morning of trying to entertain and restrain Idan while he underwent a CT scan and then a second echocardiogram.  Poor little guy wanted to play and socialize and is wondering why he can’t move his hands or turn on his stomach.  But that was the easy part.

After the two tests, the anesthesiologist came back into the room to place the IV.  Under our previous plan, Idan would have been fast asleep and would not have noticed a thing.  But Idan was wide awake, and starting to realize he had been fasting all morning.  The needle went in, but no blood came out.  So the needle went out and back in again and again, but no success.  Eventually, we gave up and decided to go to the clinic for the blood draw without the IV already placed.  (For those of you who are confused why we’d have the IV placed at this time, it is because we were at the Children’s Hospital, which is more accustomed to drawing bloodfrom babies Idan’s age than the clinic on the other side of town.)

Then, after feeding Idan, we went to our next appointment with the Infections Disease specialist at 11, and afterwards headed over to the clinic for the blood draw.  Again, the needle went in and out, this time in both arms with no luck.  The day ended with three limbs dotted with little holes, and no blood drawn.

Each time, poor Idan could not take his eyes off the needle digging underneath his skin for a vein.  Worse yet, he could not understand why his mommy was an accessory to this invasion.  Such is the case with every procedure that is done.  The parent participates in each procedure to keep their child calm and to make sure the child does not move.  But what happens when the child is poked and prodded and restrained over and over and over again?  At some point does the parent, who at one point may have comforted and soothed the child, become the enemy?  Will my tight squeeze soon be associated with pain and discomfort instead of love?

These are the thoughts and fears that ran through my mind as I watched the needle dig under Idan’s skin – no pun intended – all in vein.  As I pressed my arm firmly across his small chest and sang Idan a lullaby, I looked across the room to Akiva who was sweetly distracting Idan with funny faces and multiple toys.  How lucky Idan and I are to have Akiva in our lives, making us both laugh and smile our way through this ordeal.  This afternoon, after all the tests were over, Akiva let me have a good cry while he entertained Idan in the other room.  When I calmed down, I walked into the room to hear Idan’s giggles and watch them sharing a bag of Bamba, their favorite snack.  I am glad to have my answer, and hopeful that tomorrow will be a better day.

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.