Idan, my hero

All fun and games have to end sometime. Yesterday afternoon we found out that Idan tested positive for the Rotavirus. It was just as we came back from a fun lap around the floor with Idan dressed up as a vampire, walking around flirting and blowing kisses to all the nurses. My joke of course was, “I am count Dracula, I am here to suck your bone marrow!” Very funny, Akiva.

We were very surprised about the news, as Idan has been asymptomatic and did not have diarrhea. Nonetheless, it was very scary to hear, as they changed the rules for our room and put us in contact isolation. This means all the nurses and staff have to gown up and put gloves on before they can enter the room. They want to make sure to contain the virus and not pass along to anyone else on the floor. Sadly, having the Rotavirus means also losing all our privileges. Idan cannot leave the room anymore to walk around and see his fans and practice his walking. Amanda and I cannot use any of the common rooms, so no use of the kitchen in the family room, or even go to the complimentary coffee cart that comes by every afternoon.

We have been fortunate so far that Idan’s virus looks like a mild strain, but it is also possible that they caught it at the very beginning and it is going to get worse as days go by. The main symptoms are diarrhea and generally feeling run-down, but he can also come down with a fever and runny nose. There is no way to know if he got the virus now, or if it is a reactivation of the live virus vaccine he got when he was 4 months old, in which case it was just waiting to come back once he had no immune system left. (As a side note, this reaffirms our decision to go into transplant so soon – if he could reactivate a virus he received by way of a vaccination, then years worth of infections and other viruses would pose an even more significant threat during transplant.)

For now, we can control some of the symptoms with more IVIG and fluid replacement if necessary, but we’ll have to wait until his donor cells start working until he can clear the virus himself. So they gave him an early dose of IVIG to help with some of the virus, but they do not know how much that works. One option if he does start having bad diarrhea is to have him drink a bit of the IVIG as well, it tends to help.

The next two weeks will obviously be harder than the first two with this new development, but the very good news is that Idan has been doing so well and is going into Day 9 free of any infections or side effects from the chemo, so he is more than strong enough to fight this virus until the donor cells start coming in, which should be only about a week or so from today.  In the meantime, if you have any ideas for how to occupy an energetic toddler in a room 24/7 for the next couple weeks, send them along!

It’s been a couple days since we last wrote, so we wanted to assure you all that Idan is still doing very well.  We are very blessed to have two weeks worth of “less bad” days, and so incredibly fortunate that Idan has tolerated all the drugs well so far.  Idan has nicely adjusted to his new environment, and we are constantly amazed by his ability to make the best of his situation.

Every day we try to spend at least half an hour with Idan on his play mat.  The physical therapist brought it by when we first arrived, and encouraged us to get down on the mat with him and play so that he can continue meeting all of his milestones.  Sure enough, yesterday, we were playing with Idan on a mat in our room when he pulled himself up to a standing position and pushed against a small chair.  He excitedly gestured toward the door and continued pushing forward.  This little guy wants to walk.  So we put on his sneakers, grabbed him by both hands, and walked him up and down the hallway of our unit.  He was thrilled beyond belief, smiling and flirting with all the nurses, making sure to wave and blow kisses even if it meant letting go of one of my hands.

I can’t help but think back to the very first transplant consult we had at Memorial Sloan Kettering in New York back in May.  We asked if Idan would be chained to a bed again, as he was during his first hospitalization.  The doctor replied with a smile, “No, he should have full freedom of movement.  In fact, we’ve had a few toddlers learn to walk in our very halls.”  First, I breathed a sigh of relief.  Then, I thought, how incredibly sad.  As a mom you always dream of the day you see your baby take his first steps.  In fact, I remember thinking of that very thing when Idan was just a little peanut in my belly.  At the time, I was much more concerned with missing the occasion than I was with the how/when/where of it all.   But when I pictured him walking for the first time in a hospital room that day, it broke my heart.

Having been here two weeks, I see things a bit differently.  First, in the same spirit as Akiva’s last post, I feel lucky and grateful that, when he’s ready to let go of our hands, I might be able to witness Idan’s very first steps.  Second, I am surprisingly overjoyed and bursting with pride that Idan may soon take his first steps in a hospital.  It speaks volumes about this little boy’s personality, resilience, and determination.  He marches forward, no matter the circumstances, no matter the obstacles in his way.  He is my hero, and he can walk wherever he damn well pleases.

At first look, it is a bit unbelievable how unlucky my life has been. I mean, not a lot of folk would think that it is lucky to have a brain tumor at age 25. And while the type of tumor was luckily benign, it was located in the most unlucky of places in my brain – smack in the middle of my brainstem! Every time I went to a new neurosurgeon or neurooncologist there was moment of double-take, where the doctor looked surprised and said, “oh, that’s not a good place!” It meant that my tumor was “inoperable” and I would have been out of luck if my family and I did not find a “cowboy” surgeon with the unique skill-set that was needed to save my life.

My luck turned around afterwards. I recovered from brain surgery, had to stay an extra year at Columbia, but got to meet the love of my life as an added bonus. Fast forward a few years, and Amanda and I were lucky enough to have a beautiful seemingly-healthy baby boy. Months went by with us thinking that we are the luckiest people in the world, happy, in love and enjoying our baby boy’s first milestones together.

But luck turned around again, with a rush to the ER, three weeks in the ICU where our son’s life hung by a thread and ended with a diagnosis of Hyper IGM, a 2-in-a-million genetic mutation that left our son with a faulty immune system unable to protect him. The only cure was a transplant, an expensive and risky procedure that meant leaving our home, our jobs and our family for at least six months.

After 10 days in-patient at Seattle Children’s Hospital, spending 24-7 with Idan, tending to his needs while serving his endless demand for entertainment and company, my father pointed out something very true. He wrote to me that “both of you and idan are soo sooo lucky that you are spending this time together and you are watching him grow and develop every second of his day…which of course means every second of your day… but in today’s world how many parents can say they are able to do this…” My father is right. Despite the circumstances and the hard and scary road ahead, we are so lucky to be able to spend this time with Idan. We are lucky to both be around to see him draw for the first time, and say his first words. We are both lucky to be around to see him so happy and playful and full of joy, 24-7. Sure, we have zero income for the next few months, and both our careers are on hold, but we are saving our son’s life, and getting to spend time with our baby boy while doing so.

When Idan is cured, and we are back in NYC, back at work, trying to balance work and family again, when Idan’s army has moved on to help the next little boy in need, we will know that we were lucky to spend so much time with our first born and watch him become the hero he is destined to be.

Peek-a-boo!

An Update:

It is now the afternoon of Day 4.  Since we last updated, Idan has had two very good days, and today is starting out well, too.  Idan is eating, playing, and after 10 days of refusing the bottle, finally showing signs he is ready to drink again.

Despite having several days of multiple chemotherapy drugs, being tied like a leash to an IV pole nearly 24 hours a day, constantly being prodded by nurses to check his vitals, and being pent up in the same room (albeit with a beautiful view) for the last 10 days, Idan continues to amaze and surprise us.  He is full of energy and light.  When we take a walk around the hall, he still perches forward in his stroller, excited to see the world (even if it is just a row of identical hospital rooms).  When we brush his teeth with a little sponge, he grabs it out of our hands and does it for us.  When he wakes up in the middle of the night, he sits up in his crib, reaches for us, and smiles when we come near.  It is a blessing to be in the hospital for a week and a half and see no signs that his personality has been affected.

Although we still cringe to think what the future might bring, we are thankful that he has gotten to this point without any severe toxicities, side effects, or infections, and we are thankful that we chose Seattle Children’s Hospital.  We hope and pray that we can continue to keep him safe and well, and that the donor’s stem cells are working their way towards Idan’s bone marrow as we speak.

Now, for Some Comic Relief, the Bloopers:

So, as you might imagine, two people sharing a small space can make for a reality TV show as it is, but add in lack of sleep, stress, and a toddler full of energy and you have the recipe for a sitcom.  We thought we’d share with you a few of our slapstick moments:

Making a Big Mess:  Akiva has this very large jug he likes to fill with ice coffee – all the way to the top.  It is one of those 32 oz nalgene bottles, I kid you not.  Anyway, every day when he brings it into the room, refilled, Idan goes crazy for it.  He reaches for it, tries to grab it, and protests when we take it away.  Thankfully, he is less interested in the iPhone now that he has found this jug.  If his Aba treasures it, so does Idan.  So one day, I am feeding Idan, and Idan excitedly reaches for something behind me.  I turn around to look, and before I knew it, Idan’s little fingers wormed their way over to the table that Akiva left his jug open.  As soon as I turned back around, the entire jug was all over the floor, along with about 32 oz of coffee!  The very next morning, this time Akiva is feeding Idan.  Now the jug has found its way into some other corner of the room, and once again, Akiva left it open (says Akiva, “I was drinking out of it!”).  Akiva asks me to pull another pair of pants for Idan from the closet as he had made a bit of a mess.  So I pull open the door, and next thing I know, I am standing once again in a puddle of 32 oz of coffee that was hidden underneath the closet door.  Later that day, Idan got his hands in the Rice Krispies bowl, which subsequently wound up all over the floor.  Needless to say, Akiva has finally learned to cap his jug, I am constantly paranoid I will spill a jug of coffee, and all three of us keep hearing Snap, Crackle, & Pop.

What Day is it Again? We all know how days start to melt together when you have no regular weekend.  So yesterday, on my night off, when I set my alarm for 6 a.m., I did not take into consideration the fact it was set to a “weekday” alarm.  In any event, when Akiva called at 8:30, I jumped out of bed, and rushed out of the house to the shuttle that goes from our apartment to the hospital.  When I arrived to the parking lot, it was practically empty, and the shuttle did not come on time.  Nor did it come ten minutes later.  I called the transportation services number three times, puzzled why no one was answering the phone.  Finally I decided to walk (we are only a mile away), and appreciated the exercise.  When I got to the hospital, Akiva was also puzzled why there was no shuttle.  Akiva also remarked how I missed rounds, but they were much smaller than usual, and everyone seemed casually dressed – how odd?  As if a lightbulb went off in our head, we suddenly put two-and-two together, realizing that the faulty alarm, the absent shuttle, the transportation services voicemail, the small rounds and casual clothes were all because everyone else in the world was enjoying their weekend.  Whoops.

We have made a few updates on Facebook the last couple of days but thought it would be good to summarize everything here as well. Our two Day Zeros went by mostly uneventful. Idan is still in a good mood and happy, and he keeps up busy every waking hour. Nights are a bit harder, as he tends to get tangled in all the tubes going into his central line as he does his nightly traveling around the crib while asleep. Tuesday night, both Amanda and I stayed the night to be here for the transplant. As Amanda mentioned in her letter to the donor, the stem cells from the marrow came in around midnight and the nurses hooked them up to his IV. Over the next 5 hours they were slowly transfused into Idan’s small body and over the next week or so they will travel on their own to go live in his, now, vacant, bone marrow. The next few weeks are the hardest ones of transplant. From an immune system perspective he is at total zero. So a lot worse them where he was just with Hyper IGM. He is at his highest risk of infection, and they monitor him closely as well as treat him prophylactically with antibiotics, antivirals and antifugals meds. Also, since he has no white blood cells, there will most likely be breakdown of the cells in his mouth, GI tract, and gut (called Mucusities) and he might stop eating (to much of everyone’s surprise, he is still eating great now). Also, his skin will start to form some blisters, and it might get very red. This is all to be expected as we wait for his new donor cells to engraft and start making the white blood cells again. On the second day 0, Idan woke up with a red glow all over his skin. We were worried it was the start of the skin rash, but were then told that was a result of all the red blood cells that were mixed in with his bone marrow donation. His red blood cells had doubled over night and the red skin was a side affect. Another side effect was a whole lot of energy yesterday which was fun, but very tiring for the two of us 🙂 Today is day 1, and we are in the positive numbers. So far, the day looks positive as well.  We will play the waiting game for the next few weeks. We hung up his Idan-Do Mohwak Poster today, and yesterday, in case you missed it, he got a very cute poster from all the amazing nurses. Thanks for all your notes and words of encouragement both on the blog and on the Help Fight for Idan Facebook page.  We are so grateful to you all for your support!

Big gifts come in tiny packages.

We’ve never met you and know very little about you, nor are we allowed to for the next year.  What we do know is that you are a healthy 23 year-old man from somewhere in the United States.  You have been through half a dozen tests over the course of the past several months all to confirm you are indeed the best match for Idan.  Indeed, you are a 10/10 match and even have Idan’s blood type.  Your world has just collided with ours, and we must thank you for sending Idan the gift of life.

Around midnight last night, your stem cells arrived in two tiny packages, both labeled with Idan’s name.  When the nurses came into the room and showed us your cells to verify that the name on the packages was Idan’s, I felt a feeling that mothers rarely get to feel twice.  Seeing those tiny packages felt exactly like the feeling that rushed over me the moment Idan was first brought into my arms on the day he was born.  He was a newborn then, and in many ways he is a newborn now.  The gift of seeing your child’s future and all the hope it promised is the most wonderful gift you can receive.

Although the road ahead is long and will most undoubtedly be bumpy, the fact remains that you showed the most selfless kindness possible from a complete stranger.  Whoever you are, wherever you are, thank you.  Thank you for giving our child a second chance  at health and longevity.  Thank you for saving his life.