Idan, my hero

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.

And all Idan wants to do is dance:

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!!!

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

Dear 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

A 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.