Month: July 2017

My Birthday Wish for Idan!

IMG_0292Idan, today you turn 5 years old – a milestone in any child’s life, but even more significant for you. When you were born, your mother and I named you Idan, which in Hebrew means Era, or a distinct and noteworthy period of time. It is first mentioned in the Old Testament’s Book of Daniel as marking the end of a generation and period in time. In your naming ceremony, I explained that we saw the birth of our first child as a new distinct era in our lives. Until you arrived, our lives had been marked by a series of journeys. I literally journeyed across the world from Israel to New York to meet your mother. During that era, I had a perilous journey with a brain tumor, with a miraculous, against-all-odds survival and recovery. We connected your first name, Idan, to your middle name, Jordan. I explained that at the end of the Israelites’ 40 years journey in the desert, and before they entered Israel to start a new “era” in their homeland, they had to cross over the Jordan River. In the literature, water and the emergence from water represent rebirth. For us, this literally meant birth, as we welcomed you, Idan, into our family, and the three of us began our new journey together.
Little did we know that we would be setting out on the most challenging journey of our lives, one more perilous than brainstem surgery or anything we could have ever imagined. The journey was long, and like your ancestors, 40 years desert journey, filled with ups and downs, dangers and triumphs, losing hope and finding it again. Throughout this journey, the one thing that helped your parents continue on was your perseverance.

FullSizeRender 5Throughout the many long hospitals stays, the multiple surgeries, the thousands of needle pokes, the hundreds of medication doses, the days of chemotherapy, it was your perseverance that carried us through. Your smile, your joy, and your endless curiosity helped your parents get through the tough days. At the young age of 4, you already explained to your mother how all the pain of the transplant would all be worth it in the end, as you would finally be able to make friends the following year and play with other kids. You were so focused on this goal, that you could withstand the terrible side-effects of the chemotherapy on your little body and knew that it would just be one period in your life, an era in and of itself.

Today you turn five Idan, and my wish for you is to never lose that perseverance, curiosity and positive outlook. Yesterday, we marked the one-year anniversary of your transplant. And today, just like you predicted last year, you are spending this morning playing with friends in Lego/Robotics camp – no chemo, no IV’s, no needles, no doctors, no pain – just good old-fashioned fun. Let this be the beginning of a new era in your life – where your existence is not defined by the trauma you have had to overcome, but by the experiences you will collect that expose you to the joy and wonder of this incredible world. You have journeyed long and far to get to this point. May your perseverance, curiosity and positive outlook continue to guide you, but this time through great adventures, meaningful friendships, and fun – so much fun. And may these traits keep you steady on this new path, even as your new immune system is tested and faces the inevitable set-backs and challenges that are down the road. Today might be the end of one era, but it is the beginning of a new one as we return “home” to the life we had planned for you when we named you Idan.

We love you Idan, and wish you only positive and enlightening journeys from this day on.

Day 365 – Happy Transplantversary to Idan!

Screen Shot 2017-07-11 at 4.04.21 PMOn this day last year, we were anxiously watching a little IV bag with donor stem cells slowly being drained, wondering if it would bring the cure we so desperately needed for our little boy. It has been quite the journey ever since. Through ups and downs, we never lose sight of how fortunate we are to have made it to each important milestone, but the one-year mark is by far the most significant. If you survive a year after a bone marrow transplant with no major complications, your chances of survival long term (absent rejection, of course) are excellent. Wishing our little Idan a very happy “Transplantversary” today, and spreading some love and joy through this video in hopes of helping other little boys with his disease reach the one-year mark with as much courage, grace, strength, and hope as Idan had during the long but incredible year.

You’ll want to watch this one with sound (please like and share!!!) 🙂 Exactly one year ago, Idan had his second bone marrow transplant to cure his Hyper IgM. Please join us in wishing Idan a very happy Transplantversary!

We are hoping to break last year’s record of over 19,000 views & nearly 600 shares in honor of Idan’s Transplantversary and in support of the Hyper IgM Foundation, which is working tirelessly to improve the lives and long term outlook of children with Hyper IgM. You can help! Like and Share this video, and please consider making a donation to the Hyper IgM Foundation on our website at www.hyperigm.org/donate, or right here on Facebook: https://goo.gl/7iTC1q. Thank you!!

Day 347: Almost one year

Somehow, despite all odds, here we are with a healthy happy child on his way to kindergarten. We are still waiting to see whether Idan is cured, but his immune system is showing us very positive signs that it is ready to be put to the test. This summer, we begin a slew of procedures and tests as part of Idan’s one-year follow up. We started this process on Friday – right where it all began.  
It felt a bit unreal to be speaking to the very same physician who first spoke to us in the ER, when I was cradling my weak and breathless baby, feeling what I can only describe as rage. That feeling you get when the world buzzes around you like a tornado, threatening to take everything – everyone – you hold dear in an instant. Dr. Worgall came down to see us after reviewing Idan’s chart. He pulled a chair and sat directly in front of us, and began speaking slowly and carefully, reading the rage (fear) on our faces. He told us that Idan was breathing far more rapidly than his little body could handle, and if we didn’t get to the bottom of this, his lungs would eventually tire out and simply give up. He admitted he did not know why Idan was so sick, but told us that, “common things being common,” he would look for the things that are common, and although there was a long list of potential other causes, he did not want to speculate that the cause was something more rare unless he had a reason to. Shortly after that conversation, because of the severity of Idan’s clinical symptoms, we were taken to the pediatric ICU.  
As Idan’s breathing deteriorated over the next 48 hours, the intervention necessary to support his lungs intensified. Dr. Worgall was worried there might be some bleeding in the lungs, and recommended we do a bronchial lavage, a procedure requiring intubation. When the procedure was over, the ventilator became a permanent fixture in Idan’s airway until his underlying condition could be sufficiently treated and his lungs regain their strength. When the results from the lavage came back, Dr. Worgall and the PICU attending told us that Idan had PCP, a rare pneumonia with a 50% survival rate. Now that we had a diagnosis, we could treat it, and increase Idan’s chance of survival. To this day, we believe Dr. Worgall was instrumental in keeping our son alive.  
It had been over 4 years since we had seen Dr. Worgall, but when we saw him yesterday, we greeted him as old friends. It’s amazing the bonds you make along a journey such as ours. Dr. Worgall’s face lit up with joy at seeing a grown Idan, healthy and strong. He told us that he often speaks to his students about Idan and our family – from the difficult diagnosis, to the arguments with the residents and PICU team when things seemed to be spiraling for our baby boy in the first couple days after arriving in the ER. The experience was almost as memorable for him as it was for us. 
While a reminder of a painful time, the visit reinforced how far we have all come from that day in the ER. Idan is a healthy boy, despite having had two stem cell transplants and nearly dying from pneumonia. And we formed the Hyper IgM Foundation, which has already had a positive effect. The Foundation recently gave a grant to a promising study on gene editing for Hyper IgM, and has reached 150 families, often in remote locations, giving them comfort and a vibrant and close community. Importantly, the Foundation is now a powerful and recognizable voice in the medical community – an active participant in the dialogue about how to better diagnose, treat and cure Hyper IgM. 
A couple weeks ago, we found ourselves at the Immune Deficiency Foundation’s conference in Disneyland. Idan met other kids and families with Hyper IgM, including a little boy his age. Having just received clearance from the doctors to go swimming and be in crowds (for the first time since his diagnosis after that hospital stay four years ago!), we made sure to make the most of it. Idan splashed in the pool, rode the rides at Disneyland, and played with other kids without fear. And, for another first, Idan skipped his weekly dose of subcutaneous IgG. It was the first entire week in our collective memories that Idan was entirely free of needle pokes. 
And Akiva spent his first Father’s Day ever without worry over Idan’s future, without fear, without restraint. 
In the next few weeks, we will be raising funds to support the Hyper IgM Foundation in honor of Idan’s transplantversary, and hope you will join us in ensuring that others living with Hyper IgM have as bright of a future as our little Idan. 
To donate today please visit: www.crowdrise.com/idans-journey-to-a-cure/fundraiser/hyperigmfoundation

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