Category: Idan’s Blog

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.

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.

Quick update as we both need to get to sleep tonight so we have energy for tomorrow.

Day -2 was a hard one. Idan seemed to be restless and in a lot of pain. I had spent Saturday night with him, and he was up from 2-7AM and ended up needing morphine to calm down and finally be able to sleep. We are still not sure what the cause of the pain was, but, being on both chemo and ATG, this is expected. I then went home at 8 to take a quick nap while Amanda and her folks stayed with Idan. He did not have a good morning either, still in pain and spitting up his meds. By the afternoon though he seemed to be a bit better and was able to be cheerful again. It was the last day of chemo and ATG and we were looking forward to a day of rest.

Day-1 was a good one and did almost feel like a day of rest. He was mostly happy and playful, but definitely a hand full. His neutrophils dropped significantly and he started antibiotics to give him protection. He also got his first transfusion of blood, and will need those until he starts creating his own blood again once his new bone marrow comes in. We had some good fun on the bed later in the day as you can see here:

Tomorrow, October, 22 is Day Zero, and we have been told that the donor’s bone marrow should arrive in the hospital late at night. The transplant will take place around 11PM and go into the 23rd. So they said we will have two day zeros and day 1 will only be on the 24th. As it is written in the Book of Genesis, “On the third day of creation the Lord said “It is good” twice.” We take away that Tuesday is a good and lucky day, one that is good twice. Personally, I had my brain surgery on a Tuesday so I am happy we transplant tomorrow and have a double “good” day zero. 

Thanks all for your prayers and thought and wishes!