Category: Facebook

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!!

Idan’s 1st Transplantversary

IMG_5604

It has been over four years since our son, Idan, was diagnosed with Hyper IgM Syndrome (HIGM), a rare and life-threatening immune deficiency, and an army of supporters came together to support our family as we headed into a bone marrow transplant to cure our little boy. Two transplants later and a long journey with many hospital stays, a cure appears to be within our reach. Idan is doing amazing and will be going to kindergarten this fall. In July, we will celebrate not only Idan’s fifth birthday but also his first Transplant Anniversary, or  “Transplantversary” – a great achievement for any transplant patient, but especially for Idan, given the failure of his first transplant.  Our journey is not over, but we rejoice and celebrate this milestone and give thanks to all of you who have walked this road with us. So many other children with Hyper IgM have been less fortunate, whether with transplant outcomes or without having a donor match to even journey down the road for a cure. The Hyper IgM Foundation, which we founded, is working tirelessly to support these families and to help find a cure for all children and adults living with Hyper IgM Syndrome.

13697129_1332607503435880_8894533746877192939_nLast year Idan’s army helped raise over $19,000 in support of the Foundation and the research grants we provide. The Foundation is helping to fund cutting-edge gene editing research that will hopefully provide a safe and long lasting cure for Hyper IgM Syndrome. Today, we ask you to help us bring this future closer and make a donation in honor of Idan’s One Year Transplantversary.

Our goal is to raise over $25,000 this summer in honor of Idan’s cure and in support of the Hyper IgM Foundation. This will allow the foundation to increase its research grants to the labs focused on gene therapy and accelerate a cure.

Three ways you can donate:

 

Other ways to support the cure:

Help us spread the word! Pass this email along, or share our Facebook fundraiser. Start a fundraising page through Crowdrise or Facebook and set your own goal in honor of Idan or another HIGM family.

HyperIgm

More about the Hyper IgM Foundation:

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 of a cause that will impact the lives of many children and adults living with HIGM.

Consider a donation today!

—–

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.

Idan’s Story Is Featured In An Article On His Transplant Physician

When our journey first started, we had no idea how our lives would be enriched by the incredible people we met along the way. Dr. Laurie Burroughs is one of the fiercest and most compassionate individuals we have ever met, and she has tirelessly fought side by side with us for a cure for Idan. Her research at Fred Hutch is precisely what drew us to Seattle for Idan’s transplant, but her care, expertise and creativity is what makes us feel confident that we made the right choice. We are so lucky to have her as part of Idan’s team! Article here and below: https://www.fredhutch.org/en/news/center-news/2016/11/stem-cell-transplant-kids-rare-non-malignant-diseases.html

Day 85: It’s been an eventful week – oh, and we’re going home!!!

Let’s start with the good: On Tuesday, Idan had his central line removed. This is a big deal, a very big deal, and we are very happy to say goodbye to that line. The central line is a long tube that was placed into Idan’s chest on July 11th for the purpose of drawing blood and delivering medications and fluids without having to place IVs – not to mention delivering his new stem cells from his donor on transplant day. The central line is a necessary evil during transplant. Not only has it saved Idan from (taking a guess) hundreds of needle pokes over the past 4 months, it has also delivered some of the more toxic meds like chemotherapy in a safer way. However, the central line poses a significant risk of infection and was a constant source of stress. Did we mention it is a long tube that hangs out of Idan’s chest? Yup. It requires constant vigilance to make sure the line stays clean, and does not get pulled, kinked, or damaged (boys will be boys). Every night before he took a shower (baths were not an option for Idan), Idan’s line had to be meticulously wrapped in a special way so it did not get wet. Once outpatient, Akiva and I needed to flush the line ourselves every single night. Perhaps the most difficult of all, though, was the dressing change. At least once each week, Idan would sit patiently on Akiva’s lap for about an hour while I cautiously replaced the dressing over the line. The last few dressing changes have been especially difficult, as Idan’s skin under the dressing became more and more raw. He would scream in pain when we started the change, but somehow he would muster up enough courage to sit still through the pain. It was emotionally draining for all of us to complete that important task every week. So on Tuesday, the three of us marched gleefully into the hospital at 6:00 a.m. to remove his line. Idan did very well through the procedure and was thrilled to have no more dressing changes. He was especially excited when he discovered a “cool” coincidence on the way to the hospital that morning: “Mommy, do you know what’s so so so so soooooo cool?? My central line surgery to put in the line was on July 11th, and my surgery to remove the line is on October 11th – the same day!!!” Idan’s world lately revolves around numbers, so we were very happy he found some symmetry (we often hear how children get attached to their lines as though they were limbs, and that the removal of the line can be traumatic – thankfully, not for Idan).
Taking a step back – why the line was removed. Idan is doing very well. He does not receive any medications or fluids intravenously, and he tolerates blood draws (and all other pokes) very well. When balanced with the risk of infection that a central line poses, we all decided that the time had come to take it out. Importantly, Idan’s team of doctors thinks he is ready to go home to New York, and we all felt more comfortable making the trip home without the central line in place.

 

In the spirit of saving the best for last, we have had some unsettling blood tests lately. Idan’s ANC (absolute neutrophil count) is still dipping every couple weeks, which is concerning because it should have “recovered” to a more stable and higher level by this point. The cause can be anything from a virus to a drug side effect to graft failure, but none of the tests ran over the past few weeks have been able to pinpoint the cause. In the meantime, Idan is getting an extra shot called G-CSF every time his ANC drops below a certain level, and we just have to hope it eventually recovers. The second unsettling test was his latest chimerism results. The chimerism, which indicates how many of Idan’s cells are comprised of donor cells versus his own cells making a come-back, was tested three times. The first time, Idan’s t-cells were at 92% donor, and by the second time, they went up to 96% donor. When we tested them on Monday, however, they dropped slightly to 91% donor. Normally, this would not raise too many alarm bells, but Idan has Hyper IgM, which we are learning can make it difficult for even a good graft to stick, and he has a history of rejecting his graft. So, in the words of Idan’s transplant doctor, the results are not necessarily worrisome, but they are unsettling. We are going to follow it closely and hope it stabilizes and that Idan’s old immune system does not make an unwelcome come back.

 

And now, for the best news: We are leaving Seattle next Wednesday and will, at long last, return home. It has been quite a journey here in Seattle, and we’ve had our share of ups and downs, but we feel incredibly thankful for the good fortune we have had out here. The Seattle Children’s Hospital and Seattle Cancer Care Alliance are two exceptional centers that have treated Idan with incredible skill, but also compassion. The community here has welcomed us and taken us in for the second time, and once again made us feel like home. And the city, this wonderful beautiful city, has been an oasis in a time of immense pain, stress and uncertainty. But we are overjoyed to be going home – back to our family, our routines, our lives. We still have months of recovery and isolation to go, and just about anything is possible at this point, but we rejoice for being fortunate to have been able to make it to this point with a happy, healthy Idan.

Optimization WordPress Plugins & Solutions by W3 EDGE
%d bloggers like this: