Author: Admin

From Facebook:

Day -6: we checked in today at 8AM and got settled in our room. Sadly, not one with a view ( you would think with all our membership points 🙂 ). He received his first two dosages of chemotherapy (Treosulfan & Fluderabine) and did very well. He played play-doh and ate lunch and then played with his new Magna Tiles. Now he is working on the monthly calendar with Amanda. He still has pain from his central line surgery yesterday that is making hold his head to the side and not wanting to use his right arm too much. Hope that subsides soon. Thank you all for your thoughts and prayers.

It feels like we have been training for this forever. Transplant. And now it’s happening. This Monday, Idan will have his central line placement surgery, and early Tuesday morning we will be admitted to start chemotherapy. Six days later, the donor will donate the “cure” in the form of peripheral blood stem cells (PBSC) and the nurse will infuse them slowly into Idan’s central line. Those cells will find their way to the inside of every bone in Idan’s body. The bone marrow, which will be empty as a result of the chemotherapy drugs and immunosuppressants, will host the new stem cells. Slowly, over many many days, weeks and months, the donor cells will set up shop and start producing Idan’s new blood system, including a working immune system.

They say that transplant is like a marathon. It is long, you have to keep a steady pace and keep going. Forward, onward, keeping your eyes on the goal, the cure. Like a marathon, we have been training for a long time for this. Ever since Idan’s first transplant almost three years ago, we knew that one day we might have to run this marathon again. Idan has grown up knowing that Seattle is where he had a transplant, and where he might once again return for his 2nd transplant. He keeps asking us if he will need another one after this, and we keep saying no, that we only really get two tries.

For the last year, Idan has spent countless hours playing with us and all his babysitters doctor. Like training for a marathon, he has been training by pretending to take blood, to get shots, to send blood back to Seattle, or making believe we are taking a flight to North Carolina or Seattle to bring the blood samples there. He has been preparing for this for so long that anticipation has grown to a point that tonight he told us how excited he was to start transplant this week. He was mainly talking about all the toys that he will be getting once he’s admitted to spend the next several weeks isolated in the hospital (the ones that very kind people of Seattle have given him). Still, the excitement is there, we are all excited (and terrified) to finally start the run, the long walk to a cure.

Everything has been falling into place for now. Idan is as healthy as one can be entering into transplant. Once we start it will be hard, things will get bad and ugly and rough. Amanda and I know this and are dreading the long days, watching the chemo affect Idan, making him sick and tired, all in the name of removing his defective bone marrow and making room for the donor cells to grow. There will be many setbacks and unexpected obstacles, but we have been training for this, and we know, no matter what, to keep our eye on the finish line, the cure.

Our first full day in Seattle and we are getting used to our temporary living situation (SCCA House) and getting reacquainted with Seattle. Our appointments start on Wednesday. As before, the Seattle community has been so amazingly welcoming and have gone out of their way to help us get acclimated (including lending us a car to get around while we’re here). One very special 12 year old has organized for all her friends, as part of her Bat Mitzvah cause, to get Idan new toys and activities to keep him busy during the long days ahead. Below is just the first batch of many amazing toys she has organized for Idan. We are so thankful too her and the many that have donated these items to bringing a smile to Idan’s face and keep him busy.

Three years ago when our baby boy Idan was diagnosed with Hyper IgM Syndrome (HIGM), a rare and life-threatening immune deficiency, an army of supporters came together to support Idan and our family as we headed into a bone marrow transplant to cure our little boy. Although the transplant was unsuccessful, something unique and special came out of that first battle:  the Hyper IgM Foundation. As Amanda and I immersed ourselves in everything Hyper IgM in order to find a cure for Idan, we learned of the dire need for a community and voice for the Hyper IgM patients around the globe. HIGM is rare among an already rare family of genetic diseases categorized as primary immune deficiencies. The little information we could find tended to be outdated or inaccurate. We set out to not only fix this but to gather patients and families from around the world to create a stronger voice for Hyper IgM Syndrome patients in hopes that a combination of advocacy, education, and focused research will accelerate a cure and better outcomes for all families with Hyper IgM.

Three years later, we are going into battle again for our little boy, and behind us, we hope, stands the same army that helped us in our original fight. As we head back to Seattle for Idan’s 2nd transplant, we are calling on you to help not only us, but to help all children with Hyper IgM Syndrome. Idan is one of the lucky ones, he has several matched donor options for a transplant, but for many others transplant is not possible.  And the cure itself comes with significant risks, with transplant complications taking the lives of two other little boys with Hyper IgM in the month of May alone.  Our goal is to raise funds for research into gene therapy and other techniques that can provide curative options for all HIGM patients.

The Hyper IgM Foundation aims to improve outcomes and quality of life for Hyper IgM patients and their families through promoting and supporting research, creating and providing educational tools for the patient and physician communities, and creating a community to support Hyper IgM patients and their families as they undergo treatment and cope with this disease.  Between Akiva’s extensive experience in public health, Amanda’s legal background in healthcare and nonprofit law, our fellow board member Dr. David Hagin’s cutting-edge research into gene editing for Hyper IgM, and our scientific advisory committee that consists of the foremost experts on Hyper IgM in the world, we are confident that we can make a tremendous impact.

We hope you can join us again in support for a cause that will impact the lives of many children and adults living with HIGM.

Consider a donation today!

For those of you interested in following Idan’s journey, we will be updating Idan’s blog and Facebook page on a regular basis. We are heading back to Seattle on June 19, and expect to be admitted to Seattle Children’s Hospital in July for 4-6 weeks. For the second time, we’re packing our bags and uprooting our lives. The decision to move forward with a second transplant was even more difficult than the first time, knowing what we do now about the risks of transplant, but we have to believe that Idan will be cured, and that he will have a brighter future.

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The Hyper IgM Foundation is a recognized 501(c)(3) charity and all donations are tax deductible. We thank you for your support and invite you to stay up-to-date on the Foundation’s efforts by connecting with us on Facebook by liking the Hyper IgM Foundation Facebook page, www.FB.com/HyperIgMFoundation, and by visiting our website, www.hyperigm.org.

As a reminder, the Hyper IgM Foundation is entirely a volunteer run organization. We have no salaries, no rent and limited overhead. This means that 100% of your donation goes to fulfill our mission to improve the treatment, quality of life and the long term outlook for children and adults living with Hyper IGM Syndrome through research, support, education, and advocacy.