Day +578, Hawai'i trip, beginning.

Hello!  We have just gotten back from our Make A Wish trip to Hawai'i.  Before anyone freaks out: Make A Wish offers a wish to all seriously ill kids, not just the hopeless cases.  Zev continues to do great, thank G-D, and we all enjoyed the trip.

The wish has been in planning for well over a year.  After much deliberation, we chose the Big Island.  I will post a few pictures here.

Travel day:

Early morning ride in the limo with grandpa, 3/6/16

At first Zev was sceptical...

...but then he got to push a button

... and liked it

with grandpa in Hawai'i!

mom

mom and grandma

At the hotel.  Yes, all the important bits arrived.

The hotel is pretty awesome - it has winged lions!

Actually, the hotel also has a train and a boat, several pools with slides, a pretty awesome gallery of Buddhist art, and an ocean lagoon.

Day +565, 18 month checkup

I am glad to report that the 18 month checkup went great on all accounts.  The bloodwork looks clean and the Chimerim came back 100% Ryan!

Zev is now a little taller and a bit heavier than his brother.  He still does not run as fast as Benjamin (to be objective, few four year olds do) and does get tired a little sooner.  However, when he is distracted and has a goal to walk to, he does great.  On a longer walk that does not include running sprints, the boys walk equally well.

Both of the boys love swimming and both could not care less for soccer.  They are certainly game to practice the skills and celebrate getting a ball into the goal like the pros, but any attempt to get them to participate in a team game results in them walking off, staying on the sidelines, or, in Zev's case, lying down for a nap on the field.

Benjamin loves Legos and can build a set meant for six year old mostly alone.  Over the winter break we built some "12+" toys together.  Zev could not care less for Legos, prefers trains, and both still love cars and airplanes.  Zev, however, is distinctly better at drawing.

Both are starting a to recognize letters.  They do not quite read anything yet, but Zev did recently read O-F-F on a light switch and almost-just-nearly read "OFF" and "ON".

Sleep is pretty good most night (thank G-D, about effing time!) and fights with the boys, while occasionally bitter, are not a daily occurrence.  At least not for each parent.

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.