Thought we would showcase in one place all the clips of Idan and his match skills we have posted to Facebook:
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
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
We have been in the hospital for 48 hours at this point and have not figured out the cause of Idan’s fevers. The first blood cultures taken Sunday night have not grown anything at this point. He spiked another higher fever this afternoon of 101.7 and they took another set of blood cultures to test. This means that we are in the hospital for another 48 hours at the very least, and with every temperature over 100.3 that clock will get reset. Idan continues to get IV antibiotics until the fevers go away, even if the cultures continue to be negative.
Sadly, the side affect of this IV antibiotic has been very loose stools and the return of C. Diff which is not very fun. So we started treating him today with Flagyl again to get rid of the C. Diff and that will continue for another 14 days. Idan is still in a good mood and mostly has had energy but the hospital life (tethered poll, frequent vitals) is starting to take a toll again. In addition, having C.Diff means that we are in contact isolation again so he loses his right to walk the hall or check out the roof garden.
Amanda and I are of course concerned that no cause has been found yet, and are hoping, like our doctor, that this is just a virus that needs to run its course. If fevers continues for two more days or if other symptoms present they will probably order more tests (like a CT and some fungal detection tests) to rule out other types of infections.
We are happy that Idan’s grandparents are here this week so they can help entertain him during the long days in the hospital. We really hope that the fever goes away for good and we can hopefully get out for the weekend, but we are not holding our breath. Hoping for better news soon! Thanks for all the good wishes!
It’s been an eventful few days, all in a good way. On Sunday night, we heard the wonderful news that Idan’s new cousin Lia was born! With the help of FaceTime, Idan was able to welcome Lia to the family less than an hour after she was born. It was pretty special to see Idan’s face light up as he met his cousin for the first time. We have missed too many family occasions and celebrations to count, so it was that much more meaningful to be able to share this beautiful moment with our family from the other side of the country.
And we reached a small but significant milestone today. Idan does not need to be hooked up to the IV anymore at nights! As you recall when we first got out a month ago from the hospital, we still had to hook Idan up for 10 hours at night to an IV fluid bag that contained magnesium. We have been trying for the past month to transition the IV fluids to an oral med. First, Idan had to be able to drink 50 oz of liquids during the day to show that he didn’t require additional fluids at night. Over the last few weeks, as Idan began reaching and eventually exceeding his oral intake goal of 50 oz of water each day, we have been able to gradually go down on the amount of IV fluids (from 750 ml to 180ml, then 120ml and then 60ml) and we were able to shorten the length of the infusion from 10 hours to 3 and then 2. Next, Idan had to demonstrate he was able to tolerate oral magnesium (which can be pretty harsh on the stomach). After two weeks of experimenting and pulling back when necessary, Idan is finally tolerating the oral magnesium in a high enough dose that the clinic felt we can stop the IV altogether. This is huge news for a few reasons. First, quality of life for Idan and for us. Idan never liked sleeping with a tube connected to his line, and we never enjoyed playing nurse and disconnecting the tube in the middle of the night without waking him. Second, every time we need to access his line it increases the chance of an infection. So the less going in and out, and the less we mess with his central line in general, the better (we will still need to flush both parts of the line once a day with saline and heparin). Lastly, and most importantly, this is one less thing holding us back from getting out the central line in 2 months and hopefully getting to go home to NY. We hope he continues to tolerate the oral magnesium he gets and that his levels stay high enough without the IV dose.
In other news, Idan still has a mystery cough, but it seems to be limited to the night and morning. In the last few days, it has not been as bad as it was last week, so we are hoping it is almost clear. We will see. Idan will still wear a mask in clinic until he is done with symptoms, and of course this means that Idan has added several masks to his play doctor kit 🙂
This past weekend, we had lots of fun exploring the parks in our neighborhood, which were full of surprises. On Saturday, we discovered new trails in Magneson Park that we never knew existed. On Sunday, we went to Ravenna Park, about a ten minute drive away, and it felt like we stepped into Narnia. One minute we were standing on a large lawn overlooking your typical picnic table scene, and the next minute we descended down several flights of stairs only to find ourselves standing in the middle of a beautiful lush forest surrounding a ravine (that has to be a metaphor for something, right??). Thankfully, Idan has gone from having only enough energy to walk a few minutes outside (after a month in the hospital) to trekking an entire hour around in the park (with stairs and hills and bridges) and can enjoy these wondrous new places. Amazing how, as isolated as Idan is and with everything he has endured over the last few months, he is having adventures and seeing nature in a way he would rarely be able to back in our ultra-urban enclave in NYC. We always said Seattle is a place of healing, and feel grateful every day for these beautiful surroundings.
Idan is most looking forward to his upcoming visitors. This weekend his NY grandparents will be coming out and the week after his grandparents from Israel will be visiting for 10 days. He is very excited to see everyone (as are we!!) and we hope he continues to feel well and can enjoy this time with family.
We tested Idan’s chimerism on Monday and received very good news. As a reminder, chimerism is the percentage of Idan’s new cells that belong to his donor versus his own defective immune system making a return. The results came back showing that a whopping 92% of his new T-Cells are donor t-cells, all of his myeloid cells are donor myeloid cells and 89% of his NK cells are donor NK cells. Translation: according to these initial results (which may change over the next few months), the transplant appears to have worked! A cure is in sight!!!
We have spent the last 24 hours in a bit of a haze. It is difficult to rejoice knowing what challenges lie ahead (viruses, infections, GVHD), each of which can turn back the clock, or worse. But for the first time in a very long time, we are enjoying the luxury of hope. For the past three years, “hope” had become a four-letter word. Each time it reared its head, our hearts would be crushed soon thereafter. But unlike Idan’s last transplant, with a starting point of only a tiny T-Cell graft (7% at first) that we tried everything we could to salvage, we are coming out of this transplant with a very strong graft, and a very healthy child. We have real cause to hope that a cure is indeed in sight.
We also received some very sad news yesterday. We learned of the passing of a 4 yr old boy with Hyper IgM who had his transplant in Argentina only a few weeks before Idan. We had been following his story and talking to his mother about the complications that came up post transplant. He died from a vicious virus that snuck up on him after he was released from the hospital. Our thoughts and prayers are with this family as they grieve this tremendous and unspeakable loss. Sadly, this little boy is the third Hyper IgM child in just a few months to die from complications after a bone marrow transplant, which is the only known cure for this disease. For a disease that affects only 1 in 1,000,000 boys, 3 is an alarming number of deaths. It is also a very painful and unwelcome reminder that the first year after transplant is a treacherous road, with very real dangers that can happen at anytime. We will continue to raise awareness for Hyper IgM with the hope to accelerate a safer and better cure for Hyper IgM than the risky stem cell transplants that has taken so much from these families.
As always we thank you for being part of Idan’s army and part of a movement to continue to fight for all of these precious boys so that transplant is not the only option for a cure.
It is definitely good to be out of the hospital and back at our temporary home here in Seattle. Idan has spent the last few days enjoying his freedom from the tethered IV pole and the frequent vital checks he had in the hospital. He has been getting a lot better at taking his oral meds and is very close to meeting his daily oral liquid intake goal of 50 oz. Amanda and I still have to hook him up at night to an IV pump that gives him extra fluids and magnesium and then unhook him and flush his central lines in the morning. We are all looking forward to the day we can switch over to oral intake of magnesium and not have to do any nighttime IV fluids. Idan has told us that he plan for clinic Monday is to ask the doctors about this 🙂
We are on a twice a week blood test and clinic schedule, which ends up always leading to more visits as things come up from these tests. Today, for example, we were supposed to only have a blood draw at 7:30 a.m., and then Idan enjoyed a well-deserved freshly baked Top Pot doughnut in the Marina/Lake Union area. Just as we were heading home we got a call from the clinic that the results from his morning blood draw showed that his ANC dropped down to 1000 (it has been trending down for a few days). So we made a U-turn and headed back to the clinic for Idan to get a G-CSF shot. This shot will help stimulate growth in his bone marrow and hopefully get it to trend back up again. This is quite normal at this stage and not anything they are worried about. Idan, being the trooper he is, did not even flinch during the shot in his arm, and we were back out again in no time heading back to play more doctor at home.
The last few days have been very fun for Idan, with his Uncle Yitzi visiting for a couple of day and joining us on all our adventures and today with the arrival of two of his aunts for the weekend. On Thursday we took advantage of the good weather and went out to Discovery Park for Idan to see the beach and light house. We try to find places that are not crowded and don’t present other risks for his very week, almost non existent immune system.
As always we are very thankful to all the support Idan’s army has shown us in the past few weeks. Today, Idan came back from his unexpected shot at the clinic to a big surprise in the form of two large boxes from Amanda’s co-workers at Sheppard Mullin back in NYC. These thoughtful toys and activities (and some pampering items for us) will keep him busy and us sane during the long days ahead.
We are checking Idan’s chimerism next week, which will tell us whether he has engrafted with donor cells or not (the best measure of the transplant’s success). We expect results by Thursday or so. We will keep you all posted!