Idan, my hero

This morning, as I was pulling up Idan’s shorts, he noticed the scar on his leg.  He touched it, furrowed his brows, and — struggling to find words — asked me, “what’s that?”  For the past several months, he has been finding his voice.  Putting sounds together to make words, stringing words together to make sentences, but I was in no way prepared for this question.  Not yet, at least.

I looked in his eyes and my heart broke, knowing full well what that scar symbolizes and how it got there, but not knowing if or how to explain it to him.  Maintaining my composure, I responded, “When you were little,” —when you were little?! —“you spent some time in a hospital.  That scar is from an IV tube, and that IV tube helped save your life. There was a pesky teeny tiny fungus that got caught in your lungs, and medicine was delivered to you through this IV, and it helped the fungus go away.  This was how we learned you had Hyper IgM.”

I know this will only be the first of many questions and conversations about his time in the ICU, the bone marrow transplant, and everything since, and undoubtedly the answers and explanations will be more complicated.  How does a little boy process this information, and for that matter, how does anyone process the information that their very life once hung in the balance?  But I hope, just as Idan found the right words to ask me this morning, we will find the right words to tell him.

Well, it’s official.  Idan will wake up on Sunday morning a 2 year-old.

With everything we’ve been through lately, anniversaries and milestones are reminders to stop for a moment, take a deep breath, and reflect.  Mostly, we feel extraordinarily thankful.  Regardless of the time we’ve “lost,” we’ve gained so much along the way.

Idan is truly a spectacular person who is at once bashful and yet can entertain a room of people.  He is strong-willed, and focuses intently even while playing.  And yet, on a dime, his concentration can be broken into a bout of silliness, songs and dance.

It is therefore somewhat surprising that he is only now turning two.  And it is even more surprising how someone who has been in your life for such a short time can completely take it over, give it new meaning, shape and redefine you so that you are a better person for it.   Not even two years old, and he has already changed the course of our lives.

 Idan, my hero, here is my birthday wish for you:  May you continue to always bring sunshine into a room.  May the sun always shine on you, and may you live another 120 (or more!) years with the best of health, happiness, and goodness.

Wow, I cannot believe it has been a whole month since our last blog post. Sorry to have been away so long. I know we post small updates on Facebook, but that is never enough to keep our friends and family really updated. It has been a very busy month and I am going to try to make sure I cover the important parts:

Idan had his first cold in over a year:

This was the scariest part of the month and had us very close to being admitted to the ER. Two weeks ago, on a Monday morning, Idan woke up with what appeared to be a cold. Now, post transplant patients like Idan receive regular infusions of IgG’s (antibodies), which can help Idan clear a common cold and certain viruses, but it can nonetheless quickly turn into a nightmare. Seattle was most concerned about the risk of this turning into a chest cold or pneumonia which Idan would have a much harder time clearing. Idan was running warm and the rule from our immunologist in NYC was that if he hits 100.4 we need to go straight to the ER. We had Idan’s immunologist confer with and prep the bone marrow team at Columbia to see what protocol they had and if we could bypass the ER (which is a germ infested place).  Amanda stayed home from work as Idan’s temperature rose to 100 and it looked like we would be going in.  As the day went on and Idan’s temperature hovered around the 100 mark, Seattle said they wanted us to go to the doctor to have a virus test done to know what we were dealing with.  Thankfully, the fever went down the next morning, and the test results came back shortly after confirming he had the Rhinovirus, a.k.a. the “common cold,” and upped the temperature threshold for going to the hospital to 101F (which he never reached).

All in all it was a scary few days of feeling that we might be admitted any day (last time we were admitted in Seattle for a fever of 100.4 we had to stay for 8 days), and poor little Idan had been suffering with sneezes and a very runny nose. The strangest part about it all is that, because Idan has a Primary Immune Deficiency and has recently underwent transplant, we have been keeping him so safe and healthy that this was his first cold since the PCP last April! Luckily, by the end of the week, Idan’s cold symptoms went away and we were all able to relax a bit.

New Chimerism Results:

Last Monday we sent Idan’s blood to Seattle again and got the result on Friday. Once again very confusing results. As you may recall, last month we were upset to see his donor T-Cells drop from 30% to 15%, and this month they shot back up to 32%. This is very strange behavior and no one really knows what to make of it. Sadly, while last time his Myeliod cells held tight at 20% they have not dropped down to 13%. What this all means is still not known, except we do know that Idan’s donor graft is struggling, and may ultimately fail. But we are holding on tight to our sliver of hope that, if he can hold on to that 32% of donor t-cells, he has a chance at a cure and we would not need to transplant again. So we are still praying and hoping it sticks. Nothing changing with any of his treatment course, and we still hope we can get him off the steroids for the GVHD in the next month or so.

Moving, growing, thriving:

The other big news of the month, and what has kept us very busy is that we moved apartments last week. Since Idan got sick we knew we would need a larger place for him to grow and run around in. A one bedroom is okay for a baby, but not for an active toddler that can’t go to the playground and spends most of the day at home. Luckily, a larger 2 bedroom apartment opened up in our building and we did not have to move very far. Idan is loving the new place. We painted his room colors he chose and he runs around playing hide and go seek and enjoys exploring all the nooks and crannies (still unpacking so there are a lot of them). Idan has also been talking more, putting together sentences and thriving like most boys his age. We are extremely grateful that he has not missed a beat even with all the medical care and constant medical treatments he has to endure.

Next month Idan is turning two and we are very excited (and unbelievably fortunate and blessed) to be able to throw this incredible little boy an intimate birthday celebration for him with close family in our new home.

Hope we can update again soon. Make sure to follow Idan on Facebook.

Well, it seems like we never really get to have an easy chimerism test.  For every glimmer of good news, there’s an alarming bell sounding in the background.  This month, it is no different.

As you may recall, last chimerisms showed a nice uptick in the T-cell line but still a substantial drop in the myeloid cell line.  The T-cells are what we need to replace to cure Idan, but the myeloid cells are also important and necessary to sustain the new T-cells over time.  Idan needs these new T-cells to stick around for the rest of his life, so we’re fighting this battle on two fronts to make sure he not only has a cure, but that he has a cure forever.

With the addition of the new immunosuppressant, MMF, it seems (without jinxing anything) that we may have stopped the myeloid cells from dropping any further.  But, and here’s the real kicker, the T-cells dropped by half this month – from 30% to 15%.  This could be because the T-cells are really dropping, or it could be a random fluctuation.  Once again, we have no certainty and no clarity.

Our hearts sank when we saw the T-cells dropped, and we were only moderately comforted by the fact that the myeloid cells seems to have stopped dropping for now (for the first time in a few months, by the way).

We’ll be repeating the chimerisms next month, and hopefully the news is better and clearer.

Once again, we are reminded of how much support we have, from our family to co-workers and friends.  Akiva’s parents are visiting from Israel and Idan cannot be more thrilled.  The last time he saw them in-person was in Seattle, and things were so different then.  He has Skyped with them nearly every day since and was overjoyed to see them arrive this week.

And this week I received a sweet surprise from several of my co-workers who raised funds for Idan and ran in the NYC Brooklyn Half Marathon in honor and support of his courage and strength.  Since returning to work only a few weeks ago, I’ve learned of the great lengths the staff and co-workers have gone to make my transition smooth and ensure I don’t pick up new germs from the office.  They scrubbed every inch before I returned and even placed Purell in the common areas.  It is truly humbling and encouraging to work with such wonderful people, and Akiva, Idan and I could not be more grateful.

So, as sad as we are to receive yet another set of disappointing results, we’re feeling as strong as ever.  In fact, since returning to New York, not a day has gone by that we’re not happily run ragged by our very energetic little boy who is constantly on the move, constantly surprising us.  He counted to ten for the first time last week, and it was ridiculously adorable.  His energy, sense of humor, and incredible capacity for love isuplifting.

            As you have probably caught on to by now, the state of Idan’s graft seems to be in flux every time we check in with you all.  Today is no exception.

The last time we checked the chimerism of Idan’s graft, his donor T-cells were stable but low, and his donor Myeloid cells were dropping precipitously.  We started a third immunosuppressant (MMF) in the hopes of stabilizing the graft so that the numbers did not drop any further.

We checked the chimerism again last week, and once again we are scratching our heads.  The Myeloid cells are still dropping, but at a slightly slower rate.  The fact that they are still dropping, though, means that they can still bottom out before the MMF has enough time to save them.  Without any donor Myeloid cells, there is little hope for the long-term stability of the graft.

That said, the donor T-cells, the cells we need replaced to cure Idan’s Hyper IgM, went up from 19% to 30%.  This increase took us completely by surprise as we expected the T-cells to continue hovering around the 19% mark at best, or maybe even start falling this month.  Instead, they jumped up a significant amount.  It may have been from the added MMF or even the DLI back in December, or it may have just been a fluke.

The difference between 19% and 30% may be the difference between whether Idan will suffer from secondary cancers during his adolescence or not.  If we could sustain his T-cells at 30%, we’d be ecstatic.  It obviously isn’t a slam-dunk-cure of the sort we hoped for back when we did the transplant, but it would likely save Idan from a second transplant and worse.  The problem is, without the Myeloid cells, we still don’t know whether the donor T-cells will have enough support to stick around for very long.  Based on the overall trend, it looks like the T-cells are steadily increasing, the tiny number of B-cells Idan has are relatively stable, and the Myeloid and NK cells are still dropping, albeit at a slower rate (see chart with trend lines below).  For that reason, we are cautious about calling the increase in T-cells “good news” until the other lines stabilize.

In other news, Idan’s latest recurrence of his GvHD seems to have resolved by slightly increasing the steroids.  We are glad we did not have to increase the dose too much, and hopefully we can start tapering this Friday.  In all likelihood though, we will be doing a dance with Idan’s GvHD and the steroid dose for a couple more months until we can safely stop the steroids altogether.

Also, because his counts have been stable, Idan will not be poked for a routine blood draw after the doctor examines him this week.  It has been seven months since Idan has gone an entire week without having blood drawn, let alone two, so we are very grateful for this news.  Hopefully the trend continues and we can reduce the blood draws to once every two weeks.

             Less than 2 weeks left on Idan’s three-month course of steroids and his skin rash has returned.  Thankfully, we caught it early and it seems that a slightly increased dose is helping to clear it.  A flare-up of GVHD when tapering steroids for GVHD is not entirely uncommon, so it’s nothing to get too nervous about, but it is certainly a frustrating step back.  This flare-up will add at least a couple of weeks, if not months, of the steroids, a necessary evil.  More time on steroids means continued high risk for infection, suppression of Idan’s immune system and graft, and of course increased adverse side effects.  It’s additionally frustrating since we have been slowly tapering the steroids for the last two months now, hoping to come off of them by the third week in April, and now there’s no concrete end in sight.  Sadly, the GVHD does not indicate the strength of the graft, since you can have GVHD from even microscopic amounts of donor cells.

Tomorrow, we will test Idan’s chimerism levels to see if the third immunosuppressant (called MMF) helped stabilize Idan’s graft, which, as of last time, appeared to be in free-fall.  We expect to get the results in a couple of weeks as the blood is sent to Seattle for testing.  If the chimerism levels are stable, we’ll keep the MMF on board for a few more months at the least.  If the chimerism levels are still dropping, that probably means the MMF is not working, but we’ll wait and check again in a month before weaning him off of it.

On a lighter note, Idan participated in his first Passover seder this past week (last year he was fast asleep) and had such a great time.  He sang and asked the four questions — well, hummed it, but that counts! — and ran around room excitedly searching for the afikomen.  It was heartwarming to be surrounded by family this holiday.  For a moment there, life almost felt normal.  To all of our family and friends celebrating holidays this month, we wish you very happy, sweet, holidays.

Puppet Show – Day 1 in the PICU

It’s been a year, believe it or not, since Idan was rushed to the emergency room.  The details of that day have not yet escaped our memory.  Sitting in the doctor’s office and receiving the news that Idan’s X-Ray was very concerning; waiting downstairs with the stroller for the ambulance; the small talk of the paramedics as they hooked Idan up to an oxygen tank; the nurses and doctors whisking in and out of the ER running test after test; being admitted to a room in the ICU upstairs for an indefinite stay; lying in the hospital bed with Idan as we spoke with the doctors; our family members raining down on the hospital like a hurricane, providing much needed support.  Although we hadn’t yet comprehended the extent to which our lives had changed that day, we understood the gravity of the situation.

So today, as we mark the anniversary of that dreadful day, we are flooded with emotions.  It’s hard to pick which is strongest.  On the one hand, we deeply mourn the loss of an entire year of Idan’s precious childhood to hospitals, isolation protocols, and, worst of all, a lot of pain.  On the other hand, we feel enormously grateful that his life was saved that day, that he is still with us and that his PCP was caught before it got the better of him.  We feel grateful that we have identified his immune deficiency so that we can treat it and protect him, and that we can prevent our future children from having the same disease.  But perhaps more than anything, we feel pride.  We are almost bursting with it, in fact.  Our son is strong, resilient, and incredibly brave.  We have asked more of him than any child should ever have to know of, and he has marched forward with such courage and determination – like a brave warrior going into battle.  No matter how frightening, no matter how painful, he has endured and thrived.

Week 2 of ICU In April. Just starting to get over his pneumonia

One Year Later. Walking to Riverside Park Today

A good friend told us recently that, as a doctor, she always looks at the patient for answers when the future is uncertain.  Idan is remarkably strong, and even though he may be losing his graft, he is a survivor.  A year has passed since he was hooked up to a ventilator, and over the course of the last year, he spent a total of 60 days in the hospital, spent six months away from home, and endured weekly infusions and hundreds of tests and clinic visits.  Today, Idan is the size of a child twice his age, can run circles around his parents, is outgoing and social, is a creative artist, and even has his own repertoire of jokes he likes to tell.  If you passed him in the street, you would never know what he has been through, and you would never know he takes an average of 13 medications a day and has a severely compromised immune system.   So even though today is a sad day, filled with longing for what could have been and what should be, it is also a happy day.  Idan has somehow managed to chart his own course, and we could not be more proud of our little boy.

We wanted to share with you a quick update, and a little story that goes back to last summer that has touched our hearts.

First and foremost, Idan is doing well, still looking for ways to get into trouble while keeping us all laughing. We started a third immunosuppressant, which we hope will save the graft from slipping any further. His immune system is now extremely weak, and this means more isolation and more precautions necessary to keep him safe. Thankfully, the drug does not have many side effects and Idan seems to be tolerating it well so far. If it does not work (i.e., the chimerism keeps going down at the same rate), then we will come off the drug after 2 months. If the chimerism holds, then we’ll stay on the drug until it seems his graft has stabilized, which could be several months to a couple years. As they say, there are no guarantees in life, and there are no guarantees this drug will save Idan’s graft, but we’re not ready to give up just yet. In the meantime, we’ve been keeping busy with weekly doctor visits and blood draws and making sure Idan gets to make up for lost time with his grandparents, aunts and uncles.

And now, for our story. After Idan was hospitalized in April, you may recall that we did everything we could do to find out everything we could about his disease and raise money for the astronomical medical expenses down the road. This included a newspaper article in the New York Daily News, among other things. Unbeknownst to us, when our doorman Gus saw the article in the paper, he clipped it and made a bunch of photocopies and distributed them to all of our neighbors. He wanted everyone to help keep Idan safe and stay off the elevator if they were sick and they saw us inside, but mostly, Gus knew we’d need friends in the building looking out for us. We only found out when we saw cards slipped under our door, donations made on our Youcaring site, neighbors frequently asked us how we were doing, and offered to check the mail and bring in packages for us while we were away. When we did find out, we were so touched and caught off guard by the random act of kindness, and all the other random acts of kindness that followed.

Well, this single gesture carried further than we thought. Last week, we were greeted in front of the elevator by our neighbor Gloria. She was deep in a conversation with the doorman when we first walked in, but she glanced in our direction and immediately her eyes welled with tears. We hadn’t seen her since last summer, but, then, we hadn’t exchanged more than a couple pleasantries in the past, so it was a bit surprising at first that she was so emotional. She approached us and joyously exclaimed, “You’re home! You’re home! I’m so glad you are home and he is here, sitting in his stroller, looking so healthy!” It turns out, ever since the day Gus left the copy of the Daily News article in her mailbox months ago, Gloria has been praying daily for Idan. She tells us her family members and friends in Puerto Rico are also praying for him and constantly ask about him. His picture is hanging in her apartment and she thinks of him often.

Later that week, we bumped into our mailman, who also was very excited to see us home. He said there were others in the building asking about us, and to know that we had a lot of people looking out for our little boy.

Many of you know that I grew up in Manhattan and have spent my whole life living in apartment buildings. Despite having dozens of “neighbors” in Manhattan, it is almost unheard of to act neighborly. So I must believe it is something about Idan that brings out the very best in people, and that his cry has reverberated around our building and around the world for a reason. We feel very blessed to know these wonderful people, to live just a few doors down, and know that Idan is better and stronger for it.