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

2 comments for “Day 347: Almost one year

  1. Andrea
    July 2, 2017 at 7:10 am

    Hello- I found your blog through google search as your story is very familiar to our current situation. Our son- also born extremely heathy and happy was diagnosed with a very rare PID at one year old after getting some strange infections. It’s called Stat1 loss of function. He will undergo his first stem cell transplant this month at Luries Children’s in Chicago. It’s comforting to know more is being discovered about these disorders and the transplant was successful for your son. We hope for similar outcomes and wish you luck on the rest of your journey!

  2. Linda Wachtel
    July 2, 2017 at 2:40 pm

    I have so much to say about every experience you’ve referred to….although a different time and a different diagnosis we are all part of the same tribe…sending love, hugs and I will always continue cheering for all of you from these side lines. Keep posting and sharing, you touch so many and you have so many who have been following you from the very beginning. ❌⭕️❤️🎉❌⭕️❤️

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