Month: October 2016

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.

We wanted to take a break from our regular updates to wish everyone a very happy, healthy and sweet New Year!Tonight marks the beginning of Rosh Hashanah, a Jewish holiday celebrating the new year, 5777. Quite unlike the usual new years’ festivities, which may involve boisterous parties and champagne, the Jewish new year is typically celebrated as a community in the synagogue and then at home with family and friends. It is a time of reflection on the past year and of contemplation of the next. The next ten days are referred to the “Ten Days of Awe,” culminating in Yom Kippur, the Day of Atonement.

In the spirit of this holiday, we reflect back on this past year and think about our hopes for the next.

Last Rosh Hashanah, we were in New York with family, praying for Idan’s first graft to stabilize to avoid a second transplant. We had just launched the Hyper IgM Foundation and began what would become the most important work of our lives.

Over the next year, we watched Idan’s graft and chance of a cure slowly slip away. We made the very difficult choice to undergo a second transplant. Once again, we uprooted ourselves and relocated to Seattle. Idan had his second transplant, and, after an exceptionally difficult summer, we now have hope that our little boy will be celebrating Rosh Hashanah for many years and decades to come.

Through our work with the Hyper IgM Foundation, we have connected with patients and physicians around the world to advance research, improve outcomes and even explore new ways to cure this rare disease beyond the risky bone marrow transplant. We have seen tremendous progress on each of these fronts, which I personally credit Akiva’s gargantuan efforts in this regard. We have also suffered unspeakable loss in our patient community, as three boys with Hyper IgM passed away in the short span of just a few months due to complications following bone marrow transplants that were meant to cure them.

It has been a year of heartache and grief. But it has also been a year of hope, of progress, of joy. We hope this coming year will bring the cure we have been waiting for, and we will keep fighting and raising awareness for Hyper IgM to make sure that every child with this disease has hope for a long and healthy life.

Importantly, we wish all of you, who have held our hand, who have encouraged, supported and listened to us, a very happy and healthy New Year. May you and yours have a meaningful and sweet year, and may you all be written in the book of life.

All our love,

Amanda, Akiva & Idan