Author: Admin

This morning, we saw Idan shed his first hairs, a painful reminder of what he has been through in the past few weeks.  But as we say goodbye to Idan’s beautiful hair, we say hello to his new immune system.  Today, we dare to hope.

It’s been almost two weeks since the donor’s cells were infused into Idan’s bloodstream.  Now, we are seeing small signs that they may have made a home in his bone marrow.

There are a few levels that are being monitored on a daily basis to determine the success of the transplant.  The first and only one we need concern ourselves with for the next few months is his neutrophil count.  This is the first type of cell to grow from the donor’s stem cells. Yesterday, after being at 0 for the last two weeks, Idan had 50 neutrophils.  The doctors believe this is an early sign of engraftment – i.e., success – because it is around the time when we’d expect the donor’s cells (now Idan’s cells) to create neutrophils.  We won’t know for sure until Day 28 whether these cells are the donor’s cells growing, or Idan’s own immune system coming back, but given the time frame, the doctors are optimistic – and so are we!  The counts will bounce around a bit over the next few days (and may even go down as neutrophils commonly do), but once they exceed 500 and stay above 500 for at least two days, we will know Idan has engrafted and we will be discharged from the hospital.

Assuming this is indeed a new immune system, the next hurdle we have to be prepared for is graft versus host disease.  It can be acute or it can be chronic, and the levels of severity differ greatly from patient to patient.  We hope that in choosing Seattle, in choosing the treosulfan chemotherapy and an institution with the highest survival rate and excellent treatment of GvH, this will be a minor obstacle at worst.

As for the rotavirus, Idan remains asymptomatic, which means it has not affected him in the slightest – Idan is his usual cheerful and energetic self.  We are still in isolation because it can be contagious and everyone on this floor has a compromised immune system.  The rotavirus will still show up in his labs until he has a fully functioning immune system, so we may be discharged long before we’d be allowed out of isolation.

Thank you all for your continued prayers and support!  Many of you have sent gifts and toys to entertain Idan and they are tremendously appreciated.  We feel blessed to have gone into this transplant healthy and strong, and we owe Idan’s good health all to you.

All our love,

Amanda, Akiva & Idani

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.

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!

It is about 9:30 p.m. on Tuesday, October 22nd.  In about 2 hours, Idan’s donor cells will arrive.  The donor cells come in a small package, about a pint of blood, and gets hung from his IV stand along with the four other bags and syringes delivering fluids into Idan’s veins.  At first sight, it is all rather anti-climactic.  The cells will be infused like anything else that has been infused into Idan in the past several days.  But this infusion is unlike the chemo, the blood and platelet transfusions, IVIG, fluids, the anti-nausea meds, antibiotics, and other “anti” drugs.  This is not just any drug.  This is an infusion of seeds finding their way into Idan’s bone marrow, where they will settle, grow, and blossom.  This is the beginning of an “idan chadash” – meaning a new era – for a new Idan.