February snow, day 2

Just because we were indoors, doesn't mean the kids can't work.  I mean, have fun, right, right.

Washing dishes

Fill it...

...and empty it.

Completely

And fill it again.

And that, folks, is some winter philosophy for you.

Some more older pics

We had a cold snap here recently.  For those not familiar - that means the temperature dropped just below freezing for three whole days.  There was no snow and no ice.  The city was in near shock.  Last winter - February of this year - we had snow stay on the ground for two or three days.  The event was referred to as Snowmageddon.  Here is our version of it

Planning something, 2/7/14

Having fun with it

Not so fast!  Put to work immediately

Yep, child labor in progress

I think I'm done here, dad.

Very well.  Onto the next job site.

Are we there yet?

Maybe the ride is not that bad...

So much for riding...

Zeva gets familiarized with the equipment

At the second site with Katya, Tanya, Maks, and dad

Snowy Zeva and dad

Katya and Benya (who is up to something)

Enjoying the ride back with uncle Maks as the engine

What are you looking at?

Finally home

Day +103

We have made it to day +100 -- three days past that, to be exact -- and that is somewhat of a milestone.  Most recent genetic test showed, once again, that Zevi is negative for the genetic mutation associated with JMML.  Today's lab numbers look good as well - HGB up a tiny bit, WBC and ANC both down a little, but within normal range.  Platelets are up a little more to 193.  Good news.

We have now basked in the glory that is the milestone, and back to the business of surviving one day at a time.  Today was a good day, thank G-D.  We will take it and as many like it as we can.

Over the weekend Alla and I ran away for two nights to nearby undisclosed location.  The location included a spa, a gym, a comfy bed and no monitor to remove us from it.  It was a welcome break.

The boys were nicely cooperative, treating the Boston grandparents very decently.  Zevi even slept fairly well, waking up only 2-3 times per night.  Of course, he saved the night time pain-in-the-ass-ness for us, once we returned.  I am sorely tempted to chase Alla and Benya, and possibly the grandparents, out of the house over Thanksgiving and do some toddler sleep training.  We shall see.

In the mean time - we had a good weekend followed by a good day at the lab.  Amen.

Just some older pictures

For once, no medical updates (good thing, too), just some old videos and pics.

In May of 2013 the Boston grandparents visited and we went to the zoo.  Who says monkeys are only in the cages?

There are other videos, from the boy's birthday too, but they appear to be over the 100MB limit for the blog.  :-(  Will have to find another way to share them.

Somewhat fresher, this is from late January of this year:

Zeva's famous smile

Serious Benya after a climb

Outside a toy store

A hug and a kiss

Finally, inside the store

So, who gets the right of way?

You go, bro, you go.

I'll just move out of the way

Day +96

Today's visit to the clinic went great.  Zev's numbers continue to improve, thank G-D.  WBC, ANC are within normal range, HGB is on the lower end of normal and PLT set a new high with 180.  Also, we are off a couple of meds.  To boot, public place restrictions have been loosened somewhat.  Over all - no complaints whatsoever.

Recently the kind folks from Conexio Genomics - Australian company developing a novel method for finding donor matches - sent the boys awesome Australian gifts.  The boys love the 'roos.  The boomerangs, even decorative ones, are being kept from them for the time being.

Boys and the new toys 11/15/14

Day +90

Yesterday's trip to the clinic went very well.  WBC and ANC indicators are up, HGB is holding steady and PLT has reached a new high of 147!  Tonight Zevi remains at grandma's giving us another night to heal up and, to be honest, to rest.

Benya is having a great day of his own.  Not only did he get his flue shot like a champ, but today was the first time he spent a full day out of diapers and incident-free.  Don't get me wrong, we are far from trained and not autonomous, but still - with reminders, it was a successful day.

More cute pictures coming, I promise.

Day +84

I am glad to report some excellent news: bone marrow came back perfectly clean and chimerism showed 100% donor cells.  Does not get much better than this.

In minor news Benjamin has brought home (yet another) bug from daycare, which he has generously shared with mom.  After a brief game of musical people Zevi ended up spending the afternoon and night with grandparents Rita and Tony, while Alla and Benjamin are at home.  As usual, Benjamin is taking all in stride and is full of energy; runny nose and small fever be damned.  Alla, on the other hand, prefers to take her low fever lying down with pains, cramps, and chills.

For the moment I am symptom-free, which allows me to shuttle between the houses, ferrying supplies, meds, electronics, etc.

A small virus aside, excellent results today.  Yey!

Day +81

I am glad to report a good day today.  The blood numbers have all gone back up: WBC of 4.18; ANC of 1480 (somewhere approaching lower end of normal), PLT of 103.  Good numbers.  They too support the virus theory behind the rapid - and quickly reversed - drop.

The drawing of the bone marrow was fast and uneventful.  I have to say, our attitude towards the bone marrow biopsy procedure has changed as well.  Perhaps receiving the good numbers early in the appointment has put us at ease (in a major way, in fact).  While the first and second time Alla stayed by the operating room door chewing on her fingernails (as did I, frankly), this time we put our things down and headed out for a coffee and a bite.  By the time we got back, we found Zev awake.  We were told that he "has a temper" - i.e. he was screamed bloody murder when he woke and we were not there.  Fortunately (for OHSU) a 'child life' specialist happen to hear him and dropped by with an iPad.  Having received his favorite drug (morphine was distant second), as well as attention of an attractive lady, Zevi was content and barely noticed when we entered the room.

A scheduled infusion later we headed out the door.  A very good day.