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Day 63 – Persistent Fevers:

14329953_1388297231200240_5801254640634437046_nWe 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!

 

Day 49: No more IV meds, and other fun updates!

14184479_1375551709141459_571277656164902772_nIt’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.

Day 30: A very good sign.

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.

 

Day 24 – Building a Routine:

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!

Day 14: Another day in the right direction, and another happy occasion celebrated in the hospital.

13912898_1343132032383427_4962615802868756776_nToday marks Akiva’s and my 7th anniversary. It’s not the typical way we celebrate our anniversary (dinner, wine, a sentimental gift). Instead, we are sleeping in different places out of necessity. I woke up at 4:30 a.m. to a very alert Idan who could not fall back asleep (yesterday’s very long nap seems to have affected his sleep cycle), and Akiva rushed over at 7 a.m. with much needed coffee and breakfast. The excitement of our day was not flowers or romance, but unhooking Idan from his IV pole for exactly enough time for him to race around the halls of the unit untethered in his favorite John Deer bike. Instead of going out to a restaurant to eat tonight, we will be taking turns negotiating with Idan to take all his oral meds. No, it’s not a traditional way to celebrate, but we are celebrating nonetheless. We are together on this incredible journey, and there’s as much love and romance in that brief moment catching each other’s eye as Idan’s giggle bounces off the halls of the BMT unit down as there could ever be sipping a glass of wine.

Today, Idan cheerfully listed all the occupations he will be when he grows up: an astronaut, doctor and lawyer, in that order. Boys with Hyper IgM have a median life expectancy of 24 years. Not nearly enough time on this earth, let alone enough time to enjoy the luxury of building a career (or three, as the case may be…). But this transplant has given Idan a chance to live a long and healthy life, and he has all the reason in the world to dream big. His doctors are very happy with his progress and we are starting the slow process of transitioning his IV meds to oral so we can be discharged after his ANC count reaches 500 and stays there for three days. We are expecting at least 2-3 more weeks inpatient, but we could be discharged sooner if his counts climb more quickly. No way to tell if these new cells are Idan’s old immune system making a return or the donor’s cells starting to grow until we test chimerism in a couple weeks, but it will be an important milestone nonetheless.

Day 13 – Teenager:

13882107_1342571062439524_7192353666645223481_nToday Idan woke up late and said he was very hungry. He had a big breakfast and took his morning oral meds. Then climbed back into bed and did not want to do anything but watch his YouTube clips (Once Upon a Time… Life– an educational cartoon about the body). He fell asleep in bed a half hour later and then continued to sleep for 5.5 hours. We had to wake him after 5pm so he did not sleep the whole day. I guess in true teenager form his body is doing a lot of growing (mostly his bone marrow), and he needs his rest.

During dinner (awake and starving, just like a teenage boy…), Idan insisted on playing his new favorite song over and over again. We all had to listen to Stressed Out by twenty one pilots. Every time the nurse walked in she would say “this song again? I love this song!” Teenagers!

His counts have continued to slowly come in over the past three days, and his ANC has climbed to 138. We closely watch this number as we hope to see a slow increase over the next week or two with the goal of getting to above 500 for three days in row, which will tell us that he has engrafted. We also started to wean him slowly on his pain meds and we will see how he handles the lower dose.

Tuesday will mark two weeks since transplant day, and three weeks since we checked into the hospital. We are all feeling the stress of isolation and long repeated days. It’s only fitting that we keep listening to Stressed Out! But, all things considered, everything is going well so far.

Day 6: Another long day, but much improvement.

13681051_1337264952970135_1265469612125622542_nWell, it started out as another rough day, with Idan continuing to suffer with pain, itchiness, and fatigue when all he wanted to do was play. This morning we had a good conversation with the team who noticed right away (without us having to say anything) that, even if the pain was reduced from yesterday, the cocktail definitely needed more adjustment. We changed the dilaudid from one dose every 4 hours to a constant drip, and added a new drug that is supposed to counteract the itchiness that comes with opioids.

By evening, Idan’s mood had lifted substantially and we heard him laugh for the first time in several days. It’s the most beautiful sound. The extreme itchiness seems to have subsided and his skin rash from earlier in the week has also significantly improved.

Idan had his second school session today with another teacher from the community who teaches at the same school as the teacher who came last week. They have coordinated with each other and have already started planning a curriculum for tutoring sessions that are tailored to his interests and skills 🙂. Our heart is full, and we are so grateful to these lovely women who have added some structure, fun and normalcy to his daily routine.

Yes, another long day, but all in all, a good one.

Day 5: Pain (somewhat) under control, but new meds bring new side effects.

13669770_1336467653049865_8170639665652922012_nWe have started Idan on a regular dose of dilaudid to keep him more comfortable. It is always hard to know if a young child is in pain, and this is especially true with Idan, who played and smiled even when he was on a ventilator three years ago. This remains true today. He plays and insists on playing even though his blood pressure is elevated and he is grunting with every breath. He screams when using or about to use the bathroom, and writhes in bed with itchiness from his rash, but if you ask him if it hurts anywhere, he will insist he is fine. He is easily frustrated, very restless, and quite moody. But ten minutes after the dilaudid kicks in, he is breathing easy and having fun. So after a consultation with his team, we’ve decided to give him pain meds regularly instead of as needed. Unfortunately, the increase in pain meds comes with the added side effects of making him more agitated, itchy and tired. Worth the pain relief, but makes for an exhausting day for all of us. In the meantime, his team is working on finding just the right cocktail that keeps him comfortable in all respects.

Speaking of cocktails, during rounds today Idan bravely decided to tell the attending (who happens to also be the head of the bone marrow transplant division) that he does not like the taste of several of his oral medications. He went on to pronounce perfectly the ones he does not like: fluconozole, ursodial, and acyclovir. To his delight (and ours), the attending said we can switch his fluconozole to IV for now, thereby eliminating one of his most dreaded oral meds. Very proud of our 4 yr old for speaking up and for getting his team to change his medical plan.

When all is said and done, we are counting our blessings. The doctors are very happy with his progress and are doing everything they can to help us manage the side effects. Our very good friend Ashley is visiting from New York and has managed to keep him entertained all day. So grateful to all of our family, friends and all of you who have been supporting us along the way.

Day 0: Transplant Day!

13697129_1332607503435880_8894533746877192939_n Day 0: Transplant Day! After much delay, Idan’s donor cells arrived and they started the infusion around 1:30PM. As you can see from the photos, there is a little bag of 160ml of stem cells from the amazing human being that agreed to donate his cells to give our son a long and healthy life. Idan was in the middle of lunch, as a true New Yorker he was eating a bagel and cream cheese, and did not let the commotion stop him (or 10 nurses singing to him). Besides bringing the cure Idan’s been waiting for we do hope the donor likes bagels!
Thank you for everyone that has shared Idan’s video. We reached our goal of 180 shares in just a few hours!!! Let’s keep the ball going – keep sharing the clip to raise awareness for Hyper IgM syndrome and the Hyper IgM Foundation.

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