Couldn’t help but share this ridiculously cute video of Idani playing earlier today =)

Akiva and I let out a deep breath today.  The results from Idan’s CT scan of his lungs and the ultrasound of his liver came back, and for the first time in what seems forever, we heard the word “normal.”

For those who have been following Idan’s story for the past few months, you may remember he had a severe case of pneumonia (called PCP) in April that wreaked considerable havoc on his little lungs, and his liver was inexplicably enlarged at the time as well.  We were told by the doctors it would be a very long time before his lungs fully recovered, as there was so much scarring that each cell of his lungs had to re-grow.  We were also told that the two most significant concerns and risk factors going into a bone marrow transplant for Idan’s disease are lung and liver problems.  Knowing that Idan’s liver and lungs are FINE means he is strong, has fully recovered from the event last spring, and is more than well enough for transplant.  We could not be more relieved.  As long as we can keep him from catching a cold, virus or infection in the next week, we will be admitted on Wednesday, October 16th.

With only a week to go until the transplant begins, we have settled into our new apartment that we will call home for then next few months, and Idan is loving his playroom.  We already received several gifts from strangers and friends to help entertain him and for that we are tremendously grateful.  If only we could bottle Idan’s sweet smiles, giggles, and squeals!

On that note, we want to especially thank the Seattle community that has taken us under their wing.  Members of several congregations in the city have contributed household items to help make our stay here easier, and we are very fortunate to be surrounded by such generous people.  I’ll share one example (of many) which has brought tears to my eyes.  We received a beautiful sheet and comforter set from a young woman who just had her bat mitzvah.  She told her mother she wanted to help our family with some of her bat mitzvah money, and insisted on picking out bedding herself, telling her mother that “Idan’s parents shouldn’t have to worry about picking this out, they are with Idan.”  Whoever you are, thank you.  Idan loves rolling around on top of the comforter in the morning before breakfast, and the bedspread instantly made our new bedroom feel cozy and warm.

All our love to all of you back home and around the country and world who have been cheering us on and giving us moral support!

Last week was a difficult week, as you might be able to tell from the last couple blog posts, but this weekend brought plenty of sunshine, warm weather, and great company.  Energy restored, we are ready to face next week again.

Before we get into the testing, Akiva and I wanted to share the good news that we will be moving into an apartment about a mile from the hospital.  Idan will have his OWN room.  Since he won’t really get to enjoy it until after he is discharged (sometime in December or so), we have plenty of time to make it into an Idani-Wonderland.  He’ll be in total isolation after discharge, unable to leave the house except to go to doctor appointments, so we are working hard to make a playroom for him that will allow him to climb, explore, and discover new things every day.  Any ideas are very appreciated!

Pre-Transplant Testing Update

Since we last wrote, we had two more days of testing.  On Thursday, we had another consult with the transplant doctor and her team, and they took a nasal swab from Idan to test him for viruses.  He loves the team (as do we), so he was very happy through this consult.  He even allowed them (for the most part) to squirt water up his nose and poke around for a second to get a good swab.  We then went down to the blood clinic, and once again could not seem to get blood drawn.  Three more pokes in his arms, zero success.

After a couple hours break, we went to see the physical therapist to get a baseline of his motor skills and development.  For the very first time, Idan got to crawl around and play with toys in a hospital setting – and he loved every second!  He made a new friend with the physical therapist, and found an old favorite one – a large blue ball, just like the one he has back home.  Idan’s eyes and mouth opened wide as he picked up the ball and gave it his signature toss – and then another and another and another.  Nothing better than watching him play.

On Friday, we had to go to the hospital to complete (well, re-do) the blood draw for the third time.  Akiva and I held our breath as the needle went in, hoping and praying that this time it would work – and FINALLY, the blood started running.  Never thought in my wildest dreams that I’d pray for Idan to bleed, but when the tube started filling up, I could finally breathe a sigh of relief that it was his last poke for the week and his little limbs could have some rest.

One more week of testing to go, and then we’ll be admitted for the actual transplant on October 15th.  All our love and thanks to you all who have kept us going and given us strength to face what’s to come.

– Amanda, Akiva & Idan

It’s only Wednesday, and already we’re all feeling a bit exhausted.  Since we last updated you all, Idan has had a few more days of testing.  Last Friday, he had his echocardiogram and EKG.  Yesterday, he had a blood draw and we had conferences with the pharmacist, social worker, RN, and child life specialist.  Today, he had a CT scan, another echocardiogram, an infectious disease appointment, and a failed blood draw that we’ll have to repeat tomorrow.

Today was by far the most difficult day.

We woke up at the crack of dawn for the CT scan, and after another night of fasting, we brought Idan t the hospital at 7:30 in the morning.  He was a better sport about it than we were, smiling and playing all the way to the hospital.  We and Idan’s team decided that it would be easier on Idan if he was asleep for the CT scan, because it would mean less restraining during the scan and that we would also be able to easily finish the echocardiogram (which was halted last week when it became clear Idan was not happy with sitting still for so long), and place an IV that could be used for the blood draw in the afternoon.  The advantage with doing all this in one shot while Idan is asleep is obviously to avoid unnecessary trauma for the little guy.  Unfortunately, the sedative did not do its job very well, and Idan was awake (albeit a bit loopy) for it all.

So we had a very long morning of trying to entertain and restrain Idan while he underwent a CT scan and then a second echocardiogram.  Poor little guy wanted to play and socialize and is wondering why he can’t move his hands or turn on his stomach.  But that was the easy part.

After the two tests, the anesthesiologist came back into the room to place the IV.  Under our previous plan, Idan would have been fast asleep and would not have noticed a thing.  But Idan was wide awake, and starting to realize he had been fasting all morning.  The needle went in, but no blood came out.  So the needle went out and back in again and again, but no success.  Eventually, we gave up and decided to go to the clinic for the blood draw without the IV already placed.  (For those of you who are confused why we’d have the IV placed at this time, it is because we were at the Children’s Hospital, which is more accustomed to drawing bloodfrom babies Idan’s age than the clinic on the other side of town.)

Then, after feeding Idan, we went to our next appointment with the Infections Disease specialist at 11, and afterwards headed over to the clinic for the blood draw.  Again, the needle went in and out, this time in both arms with no luck.  The day ended with three limbs dotted with little holes, and no blood drawn.

Each time, poor Idan could not take his eyes off the needle digging underneath his skin for a vein.  Worse yet, he could not understand why his mommy was an accessory to this invasion.  Such is the case with every procedure that is done.  The parent participates in each procedure to keep their child calm and to make sure the child does not move.  But what happens when the child is poked and prodded and restrained over and over and over again?  At some point does the parent, who at one point may have comforted and soothed the child, become the enemy?  Will my tight squeeze soon be associated with pain and discomfort instead of love?

These are the thoughts and fears that ran through my mind as I watched the needle dig under Idan’s skin – no pun intended – all in vein.  As I pressed my arm firmly across his small chest and sang Idan a lullaby, I looked across the room to Akiva who was sweetly distracting Idan with funny faces and multiple toys.  How lucky Idan and I are to have Akiva in our lives, making us both laugh and smile our way through this ordeal.  This afternoon, after all the tests were over, Akiva let me have a good cry while he entertained Idan in the other room.  When I calmed down, I walked into the room to hear Idan’s giggles and watch them sharing a bag of Bamba, their favorite snack.  I am glad to have my answer, and hopeful that tomorrow will be a better day.

“Walk down this hall, then take a left and take the Frog elevator up to 7. Take a right and take the Bear elevator up to 8, and you’ll get to where you need to go.” Akiva and I said thank you and started wheeling Idan down the hall.

Vibrant colors and shapes lined the hallways, and Idan leaned forward in his stroller and pointed to each, remarking “a-duh!” at the pictures. Akiva and I smiled down at him, sharing in his wonder.

When we got to the 8th floor, we were quickly reminded of why we were here. Children with bald little heads, faces puffy from steroids, and tubes taped from their nose around their face, played and ran around the floor. We checked in for Idan’s echocardiogram and EKG tests – two of the many tests that would be performed before his bone marrow transplant – and sat down, knowing that Idan would one day be just like these children. Nothing can really prepare you as a parent for that feeling when you know your child is sick.

That thought sometimes haunts me – my child is sick. I remember when Idan was six months old, sitting in a waiting room at a hematology clinic to get Idan tested for a bleeding disorder. When he was only a few days old, he had trouble healing after a small cut. Nothing life-threatening of course, but it was enough to raise our pediatrician’s eyebrow and say, why don’t you go to a hematologist when he’s a bit older to rule anything out? I remember sitting there that day, embarrassed and uncomfortable. Here I was, a mom to a beautiful blabbering and healthy little boy, sitting amongst parents with really sick children. I felt guilty for sitting there, and guilty for taking up a seat. My son was fine.

Two months later, we again brought a beautiful blabbering and healthy little boy into another hospital waiting room – this time the ER. He was breathing quickly, but otherwise seemed fine. We were brought directly into an examination room, and were sitting around waiting for a doctor to examine Idan, when a lovely young lady came to the room holding a quilt and pillow made by schoolchildren for sick kids. I felt guilty for sitting there, and silly for accepting that thoughtful but unnecessary gift. My son was fine.

Since then, we’ve discovered that Idan is not fine. In fact, he is quite sick, and requires an invasive, risky, and prolonged procedure to save his life. My son is sick. And since then, we have sat in countless waiting rooms, and received the lending hand of hundreds of strangers. Still, sitting in that waiting room for Idan’s echocardiogram and EKG, surrounded by these sick children, part of me longed for the time when I felt that my beautiful blabbering happy little boy didn’t belong there. Now, I know he does, and there’s nothing that could have prepared me for how that would feel.

Yesterday was the third day of testing.  It was a long, difficult day (hence why I am only getting to writing about it now).

We started with the bone marrow aspiration at 11:15.  During this procedure, a sample of Idan’s bone marrow was extracted from his back bone to use as a base line for when they test to see if the transplant worked a couple months from now.

Idan was required to fast all morning before the procedure, so he skipped his breakfast.  We spent most of the morning trying to distract him from this fact, but by the time we got to the hospital, he was feeling tired, hungry and cranky.  In the procedure room, it took two nurses and both of usto put in the IV for the anesthesia, and he cried so hard during this process he lost his voice.  But he calmed down as soon as it was over, and nuzzled in Akiva’s shoulder until they came for us to move to the procedure room.  We were then taken to a small room with a very tiny bed.  The anesthesiologist administered the sedative and some pain medication, and Idan fell asleep instantaneously.  When Akiva laid Idan’s heavy head down on the bed, and everyone started rushing around him to get the procedure started, for a moment it felt like we were all back in the ICU, and a flood of memories returned.  We were told to step out into the recovery room, and it took everything I had to keep it together.  The procedure took all of a few minutes, and when he woke up from the anesthetic, Idan was his usual smiling self.

We took a break to feed him (and then ourselves), and then went down to the clinic to draw his blood.  Luckily, the nurses had the forethought to leave in the IV so he didn’t have to be poked twice.  They must have taken a pint of blood from him – so many tests to run before transplant.  He shed a few tears, but overall was calm and even a little playful while the nurses drew his blood.

After a traumatic day for all of us, we spent the late afternoon basking in sunshine at a beautiful park near the lake.  Idan saw his first big boats, and quickly forgot the earlier ordeal.  We are glad to be in Seattle, which we are falling in love with, if only for the fact that after a long difficult day, the sights of the city always bring a smile to Idan’s beautiful face.

Today was Idan’s second day of pre-transplant testing and appointments.  We had the dental exam, a conference with one of the transplant doctors, and a conference with the nutritionist.  Idan, as per usual, was ridiculously cute the entire day.  Laughing, giggling, and entertaining all the doctors (except of course when that dentist wanted to stick his fingers in Idan’s mouth – he did not like that one at all…).  Today involved much less poking and prodding, and much more talking.  Much easier on Idan, but still a long day.

The good news is that Idan’s teeth and nutrition both looked great, and we’ve gotten the thumbs up to continue what we’re doing to keep him healthy and safe until transplant.  The other good news is that the transplant doctor sounded very confident about the chemotherapy and overall conditioning regimen that Seattle is using as part of its clinical trial.  The data that they have collected so far shows significantly higher survival and cure rates using this protocol, and much fewer severe side effects.  We especially liked this doctor because her eyes literally lit up when she was talking about all the potential benefits of this protocol, and how her team is looking to influence doctors around the country (and world) to start using the same fine-tuned protocol.  We are right there with her.  It is very exciting to be part of such a promising treatment, and if your son is going to go through such a long and difficult ordeal as a bone marrow transplant, it helps to know that his experience might be used to help save lives all over the world.  Idan is definitely our hero.

In between our appointments, we had yet another surprise from Zipcar!  This time from the Seattle office, who showered us with gift cards for transportation and dinner at University Village, Zipcar swag, and – best of all – a handwritten card from the Zipcar employees with a picture of them all doing the Idan-Do!!  Apparently, ever since Akiva called back in June to explain why he had to downgrade his membership, the New York and Seattle office have been working together to see how they can cheer us up and make our stay in Seattle easier.  Lots of love for Zipcar from the Zablocki family!

After the appointments today, we walked around in University Village, a very charming outdoor shopping area in the center of the city.  Idan missed his afternoon nap because he was just too happy to be out and about.  The sun came out in time for our stroll, and overall it was a pretty good day.