Day +474, 15 month checkup looks great!

I know I have been long delayed in posting. I am pleased to report that Zev's 15 month checkup was, once again, 100% Ryan! Other blood numbers look great as well.

In other ways life has been the normal variety of crazy - from funny conversations among the boys to ER trips for what turned out to be a sore throat and gas. Oh, well. Cute pictures to follow.

Day +397

Over the weekend we have done something we have hoped for, wondered about, been anxious about for over a year: we met our donor and his wonderful family!

As I have mentioned before we made contact with Ryan on the anniversary of the transplant.  Shortly afterwords, in one of our phone conversations, Ryan and his mother Linda invited us over for Rosh Hashanah.  The next night we booked the tickets.  I wanted to text Ryan "Now you've done it: the Russians are coming, the Russians are coming!" but my wiser half vetoed that.  With much anticipation we boarded the flight to Austin on Saturday.

The only way I can describe meeting Ryan and his parents and grandmother is that it was like coming home to family.  We already had some indication of what a wonderful family the Zimmermans are - from Ryan's act, from meeting Eric a few weeks ago, from talking to Linda and Ryan.  Yet we did not dare to hope to encounter such genuine warmth as we did in their home.

9/12/15, at Austin airport

It did not take long for the wrestling to commence

Later the same day the boys (Ryan's dad Keith, Ryan, Zev and I) got to go to the UT Longhorns game (that's college football, if you did not know, and it is taken very seriously in Austin!)  The game was awesome, the Longhorns soundly beat Rice to the jubilation of the crowd.  Zev got into the spirit of things immediately.  On the way to the game he was asking whether we are going to be on the team. At the game all Zev wanted to do was get down to the field and kept asking whether he can score a goal.  I guess Eric was right and Zev's blood does run orange now.  At every interception and touchdown Zev gamely high-fived everyone and was delighted by cannons and fireworks.  Like I said, taken very seriously.

9/12/15, at the game, pre-cotton candy

At one point Keith decided to furnish Zev with a giant ball of blue cotton candy.  Zev dove straight in and came up for air a few minutes later with a blue beard and sticky fingers.  As we were getting ready to wash him up, I handed the candy to Ryan.  Zev turned to Ryan and said very seriously: "No eat!"  "Can I have just one bite?" Ryan asked.  "No eat!" replied Zev and wagged his finger.

I am pleased to share that eventually Zev shared the candy and then just about fell asleep shortly after half time.

Epic.  And that was just the first day.  Let me just leave you with a couple more pictures, taken during the weekend:

9/13/15 drinking some amazing wine with our new family

Keith, Linda, Zev, Daniel, Alla, Ryan.

Family

Still Day +382, some well overdue posts

Well over a month ago we spent several days at Sunriver, OR over the 4th of July.  Among the swimming and watching the deer play in the woods, we drove up to Mt. Bachelor and rode the ski lift to the top:

Benya and dad on the lift, 7/2/15

Zev rides up

Boys see snow in July

Likin' it

Yea, that was a bad idea.  Wet butts in 3...2...1...

During an obligatory snowball fight

Riding down

Day +382

It has been long overdue, so here is an epic picture, taken on the 13th of August, 2013

Ryan Zimmerman, August 13, 2014

Above you see Ryan donating his stem cells that would be flown to Portland and given to Zev the next day.  Talk about blood brothers!

On August 14th of this year we made contact to mutual delight.  Unfortunately Ryan was not able to join us at the Cape (more info and a few images to follow), but had a blast talking on the phone several times that day.

Turns out Ryan's brother Eric lives in Boston and Alla and I were treated to a brunch with our donor's brother.

August 23, 2015, at Newbury st

We met the first member of our new family (they are stuck with us!) and many wonderful things about Ryan and Eric and their parents Linda and Keith.  Can't wait to meet them all.  And we are working on it.  Mum for now.

Day +365, a.k.a. +1 year!

Today is a really good day.  In order.  Today is 1 year post transplant, a substantial milestone.

See that "+365"?  F*ck, yeah!

Then, we received information that the latest (11th) Chimerism test result showed 100% donor and the bone marrow looks great.  Also, today is the last day, we G-D willing, that Zevi takes Acyclovir, the antiviral drug.  So,

The last dose of it, G-D willing.   8/14/15

and Zev taking it

That's right, complete with Benjamin's butt in the picture and dad finger just barely obscuring the camera.

And speaking of donors: we spoke with ours today!  Earlier today we received contact information for our wonderful donor, Ryan Zimmerman of Austin, Texas.  We got a chance to speak on the phone, the first of many conversations, I am sure.  We can't wait to arrange a meeting with Ryan and his family.

One epic day.

Day +365

It has arrived!  Today is transplant anniversary!

To make things more exciting still, we now have our donor's information!  Until we speak with him and confirm, I am going to refrain from posting any details here.  We do hope to speak with this wonderful young man shortly.  Please stand by!

In the mean time: last night we participated in the BeTheMatch telethon hosted by KATU TV station.  Alla "volunteered" me to be on camera along with Zev, who acted perfectly until we started filming, and then he acted very much the mischievous kid.  Before we went on we got to meet a nice gentleman, a future pediatrician, who was someone's donor earlier this year.  Very call.

Following Zev's TV appearance we got a tour of the TV station, compliments of Patty Nieman of KATU News.  Zev got to see the Director's booth while the broadcast was wrapping up, and then the news set.

Career path?

and here is the link of Zevi and I on KATU2

http://www.katu.com/news/local/Daniel-Kaplan-talks-about-his-toddler-sons-bone-marrow-transplant-321837082.html

Day +362

Yesterday was a very important day.  Besides collecting the blood for the monthly Chimerim test, several other tests were run.  Since we are coming up on the one year mark, Zev had a Bone Marrow Aspiration (biopsy-light) and and echo cardiogram to check on his heart.  The procedure has gone well.  The current blood numbers, i.e. hemoglobin, platelets, and white blood cells all look good.  The echo looks great as well.

Day +356, Zevi in the news

I am glad to report things have been going well.  Next week BeTheMatch is having a telethon in Oregon and as preparation for it it has teamed up with KATU news to run a few stories of bone marrow transplants.  One of them was Zevi's.
http://www.katu.com/sponsored/bethematch/Be-The-Match-Zev-Kaplan-320350821.html?tab=video&c=y

Two very nice folks from KATU came over and taped the boys playing and Alla and I speaking for a bit about the experience and about the transplant registry.  The boys were a little milder than normal, I was prepared for a full-on brawl, but sounds like we got good footage of the boys, and especially Zevi, of course.

Naturally we taped the wrong channel when it actually was on TV, so it took a couple of days and some quick thinking from our friends and Dream Drives for Kids (thank you Chloe and Eric!) to get the link and post it.

Day +331

Ahead of the weekend I am happy to report that the tenth Chimerism test came in 100% donor!  Have a great weekend, everyone!

Day +326

Hope everyone's 4th of July was fun.  For us it was a week spent at Sunriver, OR - a high altitude plateau resort village, close to Mt. Bachelor.  The boys swam, mostly.  With life preserve jackets the boys are both fully independent in the water.  They also gamely tormented (in descending order of torment level) their cousins Paul, Felix, and Rafi.  Extra points go to Felix who has shown unprecedented maturity by taking charge of a house of four younger cousins and allowing the adults a few minutes to eat and drink.  Alla and I slept and had a few nights off, both compliments of Grandma Rita and Grandpa Tolya.

At home things continue to move along.  The boys have started weekly swimming lessons and seem to enjoy them.  The week before the trip to Sunriver Zevi had the monthly checkup.  The appointment went fine, the blood numbers are good.  As always, we await the results of the next Chimerism test with trepidation.  In the mean time, a few images.

Reading the morning paper at the coffee shop, 6/29/15

Check this out, bro!

Hmm, what to do next?  (this is when the staff get nervous)

These were taken at the 4th of July parade:

Zevi, climbing on.

Conquered!

Day +298

The last few days have brought news, all good I am pleased to report.

On Friday the results of the 9th Chimerism test came in, and, once again, 100% donor.  The very welcome news came right in time for the boys' 4th birthday which we celebrated on Saturday.  It was a hot day, but the party went great.  The balloons, the soccer, some beer, two cakes, a lot of lovely gifts and even lovelier wishes.

Some extra excitement came late in the party, compliments of Benjamin's bunny that, once again, went AWOL.  The escape prompted two late night drives to the park and even brief searches through the garbage at the party site.  Turns out the bunny was enjoying a sleepover with geed friends of ours who kindly returned him to us the next day.

Sunday was a much more mellow day with the boys (mostly) peacefully sharing the new toys.  It was an important weekend, and a good one.

Day +292, getting ice cream

All the best things in life: a car with guns on it, a dinosaur that is a transformer, stickers, ice cream, candy, and some brownies.  What else is there?

6/2/15

Day +291. Good checkup, first day of daycare for Zevi

In chronological order.

On Friday the monthly checkup went very well, thank G-D.  The blood numbers are good and doctor approved of everything she saw.  We also could not be happier.  Of course, we now await results of the Chimerims test and hoping, as always, for the right result.

The weekend was spent mostly in parks.  On Saturday we all partook in a spontaneous game of soccer, most of it kids versus adults.  The rules and team rosters were fluid, the score fractional, if not outright imaginary, but fun was universal.  Benjamin and Zev mostly stayed off the field (due to being much lighter than even the kid players), but did wonder in a few times to score goals of their own and, a few times, add randomness to the game by knocking over the goals themselves.

play ball! 5/30/15

On Sunday we all (small Russian invasion) descended on a park (thank you, aunt Vika for putting this together!)  We ate, we played, we avoided an ornery sprinkler.  The boys got very excited, had great fun, and did not nap until the ride back from the park, at 5:30 pm.  In the end, the were bathed and asleep by 9.  All and all - a good weekend.

late in the day, watching a cartoon with dad 5/31/15

Monday was the first day of Zevi being in daycare.  He was in a class different from Benjamin's - otherwise neither of them would learn - and did very well!  Even though his English is limited for now, just as we expected Zevi had no trouble communicating.  As the teacher informed Alla, at one point he said something which no one understood.  He then grabbed his crotch and clearly indicated what he needed.  Zevi then proceeded to do his business into the toilet like a champ.

Two knights 6/1/15

I will add pictures to this post later tonight.  hang in.

Day +268, brief update

Just a brief yet important note: the Chimerism test results came in yesterday and, once again, I am please to report 100% donor!

Today we got to partake in an awesome potluck (thank you, Alina and Dima) and the boys got a chance to be re-acquainted with the pool.  Both were game to be in the water and jump in, tried to swim and had a grand time.  Swimming classes it is.

OMSI last weekend

Last weekend we went to OMSI with the boys.  A pretty awesome temporary exhibit is "Labyrinths."  Here is Benjamin as Spider Man

Hanging out  4/15/2015

Day +261

The most recent checkup went very well.  Hemoglobin, platelet, and white blood cell counts are looking great.  Of course, now we wait for the Chimerism results.

Zev has great energy and good appetite, even through for about two days during the week he had the runs pretty badly.  Had us worried, but the docs said it did not look like GVH.  We even collected a sample of the analysis which I ruined by not placing it in a fridge (double bagged, for those planning to eat out of our fridge ever again).  By the time Alla got ready for sample number two (no pun intended) the diarrhea was over as suddenly as it arrived.  Or to be more precise, it jumped over to Benjamin who has it today.  Alla and I can't wait.  And speaking of evacuating the bowels - last week the both of the boys managed to go potty in the toilet.  First Alla got Zev to try and heaped praise on him when he succeeded (at that point she just had to get him to sit down at the right moment, not sure how much control Zev had of anything after).  Benjamin listed for a while and, of course, had to get in on the racket.  Each of the boys were rewarded with a toy.  And to conclude the theme...  last weekend following the Lego class all of us went to a coffee shop, as is our custom, for coffee, hot coco, and bagels.  At some point when we were outside the store Zevi decided he would like to pee.  So, he proceeded to pull down his pants and pull-up and made a puddle right in front of the cafe door.  This was, as they say, a teachable moment on the merits of restrooms.  To the credit of patrons and owners no one bat and eye, as if puddles of pee materialize on the sidewalk outside on daily basis.  More importantly, we were still welcome at the cafe next weekend.

Day +236

Hello!  It has certainly been a while.  Today we got the results of the 7th Chimerism test and, thank G-D, once again it is 100% donor!  The over all blood work looks very good as well.  Things took longer this time because of a week's delay in the appointment.  On the planned appointment date we were in the middle of an unpleasant stomach bug and the clinic agreed that a will-to-live-sucking virus is best kept away from a immune-compromised people.  We have since all gotten better and are no longer contagious, if anyone is wondering.

Life has been moving along, one week, one runny nose, one evening at a time.  In recent days Zevi has been sleeping better.  We are grateful for every night he lets us sleep until 6:30 uninterrupted and hope he makes it a habit!  The boys have been playing together more as well, a couple of times over an hour at a go, having conversations.  Just so you don't think it is all roses here, there are still bitter conflicts with Benya over hitting his brother and with Zeva over throwing things if he wants one more book at bed time, for example.  In most cases the real culprit is being tired or sleepy or cranky, but I refuse to accept that as an excuse for hitting or throwing.  Which leaves me, more often than not, in the role of a barking enforcer.

At other times, things are sweet.  The boys give hugs as we leave for work and remind us that they are our friends (sometimes strategically / preemptively to avoid getting in trouble).  In recent weeks I have taken the boys for ice cream after work a couple of times and the ice cream shop is still there.  We still need to work on estimating the amount of ice cream per child, as more than half goes uneaten, but this is progress.  Today, for instance, Benya and I went to Costco while Zeva, grandma Rita, and mom went to another store.  Both trips went well, no fight over who gets to go with mom, and boys helped unload the groceries.

A quick highlight of personality difference.
Zev: recently for the first time produced a drawing that is not abstract art.  With some small (unspecified) amount of help from the nanny he drew a green field for grass, yellow for earth and blue for the sky with a couple of flowers and even a butterfly (sponge, came with a set).
Benjamin: on Monday at 'circle time' at the daycare Alla got to witness a rare occasion of Benya volunteering to tell a story about his weekend.  While other kids mostly spoke of Easter, Benya offered an entirely imagined account that went something like this: "We went up on an escalator, then up on an elevator, and then the transformer came over and pew-pew-pew-pew-pew-pew."  Suffice to say Transformer cartoons are still off limits.

I shall conclude on this cheerful, if somewhat violent note, and leave everyone with the 7th result of 100% donor.  F@cking A!

Day +221

This will be a straight re-post from Dream Drives for Kids.  There is not much to add:

We wanted to say "thank you" to Tesla Motors and everyone who came over to Portland International Raceway yesterday for our "Dream Drive Experience" event. Special thanks to Tyler Um, Jeni Noerenberg Bartley, and Robert Gordo for the amazing photography, E.C. Mueller for the track, and the FANTASTIC team at Tesla for providing the cars.

We had nearly two dozen families join us throughout the day and by all measures it was a great success. Also, if you're not sure whether kids like going from 0 to 80 in under four seconds ... have a look at some of the reactions the media captured during the event:

http://www.oregonlive.com/…/tesla_motors_gives_sick_kids_t.…

http://www.kgw.com/…/…/dream-drives-tesla-portland/24877357/

http://www.greencarreports.com/…/1097295_kids-react-to-tesl…

http://www.motorauthority.com/…/1097297_watch-kids-react-to…

https://autos.yahoo.com/…/kids-react-tesla-model-p85d-insan…

http://greencarreports.kinja.com/watch-the-tesla-mo…/+travis

http://www.popsci.com/tesla-model-s-now-insane-mode

We will DEFINITELY be doing events like this in the future so please share the word about Dream Drives for Kids and "like" and "share" this post with your friends!

Day +214, a very fast ride

Today the boys got to be a part of a great event put on Dream Drives for Kids and a local Tesla store.  In short, the folks from Tesla brought some of their most awesome cars to Portland International Raceway and drove kids around.

Section for the car fanatics:
Tesla Model S, P85D.  691 hp, 0 - 60 in 3.2 (!) sec.  More impressively, while Bugatti Veyron Supersport goes 0 - 30 mph in 1.2 sec, the P85D does so in 1 flat.  Yep.  Fastest production car off the line.  And it is a sedan.

For non-car fanatics:
The Teslas (we rode two) were super-fast with takeoff acceleration that not so much pushes but smashes one into the seat.  In a way that makes all in the car grin uncontrollably and ask "can we do this again, please?"

And do again we did.  First Zevi rode upfront with Eric, with Benjamin, baby sitter, and dad in the back.  Then we switched the boys.  Then baby sitter and dad got kicked out and the camera crew from the Oregonian got in.  Zev was good to go; Benjamin was a little apprehensive, but once he realized that a) his brother is with him and b) he gets to ride again - Benjamin was in.

The boys had a blast - they ran rampant, refused to pose for pictures (got photographed anyway), interrupted everything they could, climbed in other display cars, and variously frolicked in the sun.  They asked to ride in the "white car with orange wheels" which happened to be a 2008 Porsche 911 GT3 RS (courtesy of Dream Drives for Kids; alas only on display today).  Then they got to ride again, in another Tesla.  It was pointed out to me that I am setting somewhat unrealistic automotive expectations, given that by now Zev has ridden in a McLaren mp4 12c, a red Ferrari 599, and now a pair of Tesla P85Ds.  It was later pointed out by another (very wise) person, that if I am lucky, the Tesla they rode today just might depreciate enough that I will be able to afford they exact car they rode today by the time then earn their licenses, G-D willing.  Be it as it may, they boys had a absolute blast.  While I was asked to refrain from specifics of the drives, let me just say that we all enjoyed the acceleration and speed of the Teslas to the fullest, while in the safe hands of our excellent drivers.

Many thanks for Emity, Eric, Chloe, and Cooper Peterson for putting on this awesome event and a great Thank You to the folks at Tesla.  And here is the link:
http://www.oregonlive.com/portland/index.ssf/2015/03/tesla_motors_gives_sick_kids_t.html

Day +201

Yesterday we received another great result: the Chimerim came back at 100%.  We breathe, we move on.

Life continues at the Kaplan house.  The boys are charming and infuriating within a span of minutes.  Some cooperative play continues, though half the time it is Benya trying to get Zev to do something bad.  Sleep is still touch and go, with Zevi waking up 2-4 times per night.  Two being the much preferred option.

The important news, however, is the Chimerim, which is awesome!

Day +199

Fun day and a good weekend.  Got to play around in the park with the boys.

Zeva drive the ball as Benya passes to Natasha, 3/1/15

on the field

However, the weekend was not all fun and games.  Project FIRE_TUCHES finally saw the two prototypes delivered to the customers.  You will note that one of the customers requested the change in the propellant mixture, resulting in blue-and-red flames, as oppose to the traditional yellow-and-orange.

Benya tries on the jet pack and adjusts the straps

Clients receive the prototypes

They seem satisfied

Test run

Project FIRE_TUCHES is launched

We at KrokWorks, division of Kaplan UnLimited, are proud to report the launch of our inaugural project, Project 1, code named FIRE_TUCHES.  In the interest of full disclosure is should be stated the inspiration for FIRE_TUCHES came to us via opportunistic industrial espionage, i.e. we saw it on someone at Costco.  Regardless, the project was launched.  Here is the progress report to date.

Fuel tanks being painted, 2/22/15

Back plates receiving a coat as well.  Not sure what happened to image orientation here.  2/25/15

Another paint coat for the tanks

Back plate customization, of course.  Again, not sure on the orientation.

Fuel tanks mounted

Gots to have fayia!

 As a matter of fact, thrust was deemed insufficient and final design saw fuel dispense increased by 50%.

Test fire was a success.

Next step will be custom harness for each unit and delivery to the clients.

Day +194

Today Zevi had another monthly appointment.  It was a long, but very good day.  It was long because Zevi got the (possibly last) infusion of pentamidine.  This one goes in via IV over a couple of hours.  And if all goes well - today was the last one.

The blood numbers look very good.  White blood cells are down a little, neutrophils are down a fair bit, but this is consistent with Zevi fighting off a bug (which everyone in the family now had, I am the last one).  Platelets are up to 294k, second highest since BMT.  Himoglobin is also at excellent 11.8.

Zevi appears to be clear for travel and public pools, even.  We are still staying away from indoor public spaces due to the flue season and lack of vaccinations - those are due to start at a year post transplant if all is well.

Of course, blood was also taken for the monthly Chimerism test and we await the result anxiously.  In the mean time - it was a great day.  Here is Zev's picture from today.

2/24/2015

Blowing glass

Two weekends ago the boys got an amazing opportunity to blow glass, compliments of Georgia, Aaron, their daughter Elena and their very patient dog, Cesar.  Here are a few shots taken at Elements Glass.

Here is Elena, getting ready to show the boys how it is done.  2/8/15

Aaron in his element

Aaron and Elena at the kiln

Getting some color with dad

Geared up

Boys receive instruction

Elena blows out a ball

...and a bit more clear glass...

While Aaron works, we get to hang out with Georgia and Cesar

Zeva's turn

Blowing out the ball while Aaron shapes the glass

Together at the kiln

Benjamin gets into the spirit of things

It was an absolutely awesome time!  Thank you to Elena, the perfect hostess, Georgia and Aaron for a chance to visit and play at Elements Glass.