Author: Admin

Hospital waiting rooms

“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.

Hospital hallway 9.27.13

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.

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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.

Day 3 of pre-transplant testing – painful

9.26.13

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.

Zipcar Seattle Surprise!

Thank you Zipcar® Seattle for this amazing surprise gift bag! 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! Follow Help Fight for Idan at www.idanmyhero.com

Packing up for Seattle . . . “Cause I’m leavin’ on a jet plane, Don’t know when I’ll be back again. . .”

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.

Update – We found a flight! Thank you for all your support!

Generosity

 

09/20/2013

Great news!!! We are literally floored. After 48 hours of frantically searching for a private jet to fly out to Seattle, sharing our plight with nearly 25,000 people, hundreds of which were sharing with their contacts and hunting down leads, we have a flight! A very generous wonderful man has offered to fly us all back in his private jet as he returns to the west coast from New York City tomorrow night. We are overjoyed and extremely humbled by the outpouring of support, and the way you all mobilized so quickly to help Idan. He is quite a special boy and you all played a part in helping to save his life this week. THANK YOU from the bottom of our hearts!!!

 

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09/18/2013

 Idan needs your help flying to Seattle

Looking for a Private Jet to fly out to Seattle Having exhausted all other options, we are turning to you for help!

Idan needs your help getting to Seattle! Anyone have access to a private jet or know anyone that does? We were supposed to fly through Corporate Angels to Seattle because of his severe immune deficiency, but that fell through. Our first appointment in Seattle is September 24th (Tuesday). The owner of the Jet would be able to donate the flight through Corporate Angels for a tax deductible.

Commercial flights pose tremendous risk to Idan because of his severe immune deficiency. Between the dense crowds at the airport and sitting on a plane with dozens of strangers, commercial flights are well-known for germs. Idan’s too little to keep a mask on, and even that cannot protect him from all the germs. We’ve looked into all the non-profit options for flying by jet, and they either do not have any flights available in the next few days, or would require us making several pit-stops along the way.

Thanks in advance for your help!

~Amanda, Akiva & Idan

 

Seattle, here we come! Preparing for Battle.

GenerosityDear Team Idan,

More good news!  We finally have a date for Idan’s bone marrow transplant.  Our first appointment at Seattle Children’s Hospital is scheduled for September 24th.  From there, we will have about 3 weeks of tests to confirm that Idan is well enough for transplant.  Assuming all goes well, Idan will be admitted into the hospital around October 12th, receive about 5 days of chemotherapy, have a day of rest, and his bone marrow transplant will be on or about October 18th.  For those of you who like numbers, 18 is “chai,” or life, in Hebrew.  Idan will spend about 50 days in-patient, and another 50 days or so near the hospital before we can return to New York.  We hope that his new immune system begins to grow and develop over the course of the next year.

The donor they have chosen is 23 years old, male, and healthy.  He is a perfect match for Idan and even has his blood type.  To save the life of a child is the greatest gift in the world.  if you’re not registered as a donor in the national bone marrow registry, it is as easy as a cheek swab (see www.giftoflife.org for more details).

Over the course of the next week, we will be preparing to leave everything and everyone behind for six months in the hopes that we will return with a fully-cured little boy.  Since we announced that we were going to Seattle, we’ve received dozens of emails and messages from complete strangers offering their support, their friendship, and even their homes, and it makes all the difference.  Incredibly, we’ve received donations from over1,400 people through our fundraising site, allowing us to reach nearly 75% of our goal.  We feel stronger than ever, and could not have gotten to this point without all of you.

For those interested in more frequent updates during the transplant, follow us on Facebook, visit our new blog (which we’re still working out the kinks…) atwww.idanmyhero.com, and join the Idan-Do Mohawk Campaign!

Thank you all for your support!

Love,

Amanda, Akiva, & Idan

Thank you for being Idan’s army!

GenerosityA Note on Generosity: In the past few months we have been on the receiving end of so many acts of kindness from friends and strangers alike. While we cannot always find the time to thank everyone personally, it is the support we get from #TeamIdan that keeps us strong and gives us hope as we enter into the next stage of our journey. This post is all about you!

Here is a non-comprehensive laundry-list of what Team Idan has done: You have donated your time and money to support Idan. You have Liked, Shared, and spread the word about Idan’s cause around the world. You have written articles and published stories and reports in the news and media. You have written, emailed, called, texted, stopped us in the street, and left notes on our fundraiser page to encourage us and give us strength.

You have sent books, toys, DVD’s and more to keep Idan entertained in the hospital and at home. You have planned everything from rooftop parties to bake sales to support Idan. You have styled your hair or your kids’ and pets’ hair into crazy Idan-Do Mohawks. You have prayed for him in many languages and in many ways. You have advocated for us with the insurance company and doctors. You have babysat, played with and entertained him. You have brought us home- cooked meals and you have planned elaborate food delivery schedules for our next hospital stay. You have offered us your homes, cars, services, and your friendship in Seattle. You have advised us on medical areas we have only started to understand. You have been a shoulder to cry on and an ear to listen.

You have done all this and more and asked nothing in return. You generosity knows no limits and your kindness is humbling. We wish we can thank each and every one of you and give you a hug. Human nature is inherently good and you have all proved this. Thank you #TeamIdan for all you do.