Month: April 2016

If at first you don’t succeed, try, try, try again.

Seattle_Skylinef8ad5827951f.1I’ve been holding my breath. Waiting for our lives to change course, waiting for a miracle. Hoping, wishing… dreading. The past three years, we have been in limbo. A cycle of joy and devastation that seems to be in an unending loop. If you’ve been following our story, you know that we had a flicker of hope that Idan’s first bone marrow transplant may have worked just enough to afford him with some immune function that could enable him to live a mostly normal life. After two trips to North Carolina, multiple blood tests, and months of waiting, we’ve received the test results. Idan does not have immune protection, and does need a second bone marrow transplant.

It’s official: we are going back to Seattle to save Idan, with the hope that a new donor and a more aggressive approach will result in a cure once and for all.IMG_2985

Things will be different this time. Idan will be nearly 4 years old. He is a curious and insightful child. Questions like “when will I go to a school outside” and “why don’t I have friends” are trickling in now, so it’s hard to imagine what kinds of questions will race through his inquisitive mind as we take him for one test after another, put him through surgery to stick a tube into his body that will become a permanent fixture during his stay in Seattle, confine him to a hospital room for 30 days, give him chemo that will turn his stomach and make him lose all his hair. Rip him from his home, his grandparents, aunts, uncles and cousins, his teacher, his babysitters, everything he knows and finds familiar. What questions will run though his inquisitive mind.

Akiva reassured me, “he’s still the same Idan.”  And he’s absolutely right. Idan is incredibly strong, resilient, unstoppable, and turns every challenge into a game. In the past few months alone, Idan has learned to read, can add and subtract double-digit numbers, easily counts to 1,000 by himself, and can tell time using a roman numeral clock. He tells jokes, makes funny faces, loves to play doctor, pilot, and board games. He still loves to paint and joyously tackles the most intricate of Lego models. He genuinely loves life, and he is full of boundless energy.

All of these character traits will be tools for him during transplant. His obsession with numbers will mean that, when the nurse is taking his blood pressure with the cuff that squeezes too tightly, he’ll be too busy watching the numbers change on the monitor to mind the discomfort. His joy for playing doctor and connecting vials to syringes (thank you Baxter for the toy IVIG kit) will mean that he will be excited to watch how his central line connects to the syringes and IV tubes, so maybe he won’t be so bothered by being tethered to Johnny Five (his IV pole). His ability to turn even the most mundane things (“Mommy, let’s talk about what’s in the closet!”) into games will help us pass the long days tied to a bed in the hospital.

And, perhaps most importantly, every minute will be spent with the two people in this world that love him the most, a rare and precious gift that we do not take for granted.

So yes, transplant, especially the second time around, is scary and comes with the very risks that make up a parent’s worst nightmare, but Idan is strong, Akiva and I will be there to hold his hand and carry him through it all. We will keep him smiling that brilliant smile, and fight with him for a better future.

Idan Getting his Antibody Infusions – SCIG

Idan is doing a lot better. Thanks all for the good thoughts and prayers. If you ever wondered how Idan’s weekly infusions go, see below clip just posted to the HIGM Foundation site. Just FYI, Idan’s matter of fact approach to getting poked by three needles is not normal for a kid his agesmile emoticon We are very fortunate that he does so well with these infusions. See more here: http://www.hyperigm.org/immunoglobulin-replacement-therapy-examples/

Idan Has A Virus :(

Poor Idan has a really bad virus. Was up all night coughing and sneezing. Today at the doctors, even though he was so tired and out of it, he still insisted on giving Amanda a full check up. We still don’t know what it is, we did X-rays, virus swans and a lot of blood test. So far no clear picture. Probably a bad virus. Hoping he starts feeling better soon.

One Hundred Voices

Puppet Show - Day 1 in the PICU

Today marks the third anniversary since that fateful trip to the ER.  The very first sign we had that our world would come crashing down.  I remember our silent speedy march to the pediatrician’s office that morning.  The devastating news that Idan would need to be transported to the ER, immediately, because he wasn’t getting enough oxygen.  The fights with the doctors to allow us to feed him, with a burning feeling in the pits of both Akiva’s and my stomachs, knowing that his condition was deteriorating right before our eyes.  It’s an indescribable feeling to watch your baby be poked, prodded, and struggling to breathe. To know that the next breath could be his last.

Week 2 of ICU In April. Just starting to get over his pneumonia

Week 2 in PICU.  April 2013

When we walked into the hospital that day, we stepped into a vortex.  An unfamiliar and unfriendly world.  We were terrified beyond belief, and drew strength and courage from the one person who seemed to have more than any of us put together – Idan.  It astounds us to this day that, despite tubes down his throat, in his nose, IVs in both arms and legs, restraints on his wrists tethering him to a grown-up size bed, surrounded by strangers and loved ones wearing masks and yellow gowns, despite all that, his little fingers curled around the little caterpillar his grandparents gave him, and his eyes shone bright, and he smiled and giggled.  We turned on the music and danced in his room.  We did puppet shows and read books, we even introduced him to Sesame Street (all the rules about screen time seemed to fly out the window).  Three weeks spent in the pediatric ICU, and Idan fought off PCP – a pneumonia that threatened to take his very life.

You all know how the story goes by now… We emerged from the hospital to discover that his pneumonia was simply the introduction to an even scarier world: the world of Hyper IgM.

When we started this journey, we felt so alone.  The disease was so rare, and there was no simple way to reach others who had it.  That all has changed.

After three years, we have built an army of other parents, patients, and physicians who know all about Hyper IgM.  We receive messages and emails on a weekly basis, introducing us to a newly diagnosed family, or patients who have lived with the disease for decades.

Earlier this week, we spoke to a mom of nine children who shared her story with us.  Five boys born with Hyper IgM.  Three of them passed away much too soon.  Two days later, we were contacted by a family who, like us, rushed their son to the ER because of PCP.  And that same week, a family from South Korea, who found the Hyper IgM Foundation’s website and expressed such gratitude that, after so long of fighting this disease on their own, finally they were connected to a community of others facing the same challenges they do on a daily basis.  When these families were introduced to the Hyper IgM community we founded a couple years ago with the few other families we had been fortunate enough to meet, the response was overwhelming – as it always is.  Dozens of comments of welcome, advice, and support.  I read the comments on my way home from work, and burst into tears.

Yes, we were so alone once.  As were all of these families living in different corners of the world.  New York, Louisiana, Ohio, Florida, Texas, Illinois, Canada, Australia, New Zealand, England, the UK, Romania, South Korea – just to name a few.  We have all joined hands, and all of a sudden, one voice was replaced by one hundred voices.  We have supported each other through bone marrow transplants, infections, even cancer and death.  We are not alone anymore.

IMG_1886For the past three years, we have spent every free moment becoming experts on Hyper IgM, consulting with the world’s foremost immunologists and transplant teams, attending conferences and meeting families living with the disease.  Last year, we formed the Hyper IgM Foundation to improve the quality of life and longterm outlook of patients with Hyper IgM, and we have been so grateful for the outpouring of support we have received.  We are already accomplishing our mission, which is in large part due to the tireless efforts of Akiva, who has spent every waking minute working closely with families, physicians, and other immune deficiency networks and foundations.  We have found friends and allies in physicians around the world who volunteer their time to consult with parents about treatment options and frequently lend their wisdom to answer questions raised by members of our community.  Because of the work of the Foundation, there is now heightened attention on critical research that needs to be done to understand more about this rare and tricky disease.  So not only are Akiva, Idan and I not alone anymore, no one with Hyper IgM has to feel alone – ever again.

 

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