Day +131

Haven't written an update for a couple of weeks.  Some important dates have taken place.  For instance, on Sunday was the last day of immune suppression.  That's it - Zevi's new immune system is completely loose and we are down to one daily medicine.

Also, I was gone all of last week and Alla had to handle things here - with (more than) a little help from our friends.  The semi-weekly trip to the clinic went well, with all the numbers performing nicely.  Not everything has gone perfectly last week, however.  During one of the daily line flushings Alla noticed some blood - the line has burst (on the outside).  Long story short, folks at OHSU ER fixed up the line, your basic plumbing job.  The fix, however, held exactly one night and so Friday night Alla and Zevi were right back at OHSU.  Since the ripped line represents an infection risk, the decision was made to push the scheduled removal of central line forward.  So, as of Saturday morning - the line is out.  In the end, I came home to Zevi with no line and just in time to give him the final (we really, really hope!) dose of Tacrolimus.

At his point both Benya and Zeva have runny noses and a bit of a cough.  Zeva did spike a bit of a fever, but it is below the 38 C line and is clearly related to the bug.  We hope it does not go higher and we don't have to head to OHSU.  We will be watching the fever carefully.

What has been working a little better, knock on wood, is sleeping.  Last few nights Alla has not really slept in the boy's room and the slept nicely on Sunday, both day and night, which I really appreciated with Alla already exhausted and me recovering from jet lag.

While this was not an easy week - especially for Alla - we are all home and Zeva is without this line and off immune suppression.  We breathe, hope for another good night's sleep and keep going.

Day +117

Another week has passed.  The weekend is over, new week rolls along.  Another step down in Zevi's Tacralimus dose.  Another Chimerism test showed 100% donor!  Good news.

The whole sleeping thing continues to elude us.  Part of the night I take regular trips over, part of the night Alla spends shuttling between the two rooms, two beds.  Just crazy.

Benya is doing well, his thumb does not bother him much and it looks like the nail is about ready to fall off.  Sorry for that bit of graphic imagery there, but hey, I calls it as I sees it.  I am using the opportunity to introduce the boys to good music.  The official daily thumb bandage changing song is "Yellow Submarine" by The Beatles.  The boys seem to like it and I slip one classic or another into the mix.  We have a fresh crop of books, in both Russian and English.  A bit hit or miss, but mostly hit.  I think we have been making some progress on the iPad from too.  Though we really have to get that sleeping business under control.

Over all - a good week, a few crummy nights, a good day.  We will take it.  I may feel differently at 4:30 AM, but now - we'll take it.

Day +110

Zevi's clinic visit was yet another good one.  All the blood indicators have pretty much stayed flat, with WBC and ANC going down a fraction, while HGB and PLT went up a little, with platelet count topping 200.  We are now officially on one clinic visit every two weeks.  

More, the removal of the central line has been authorized.  This will mean pokes when blood is drawn, yet will also mean the end of weekly changes of the dressing.  On balance, I think one poke beats two dressing changes.  The overriding reason, however, will be the reduced chance of infection.  Our oncologist has authorized the removal, the question will be the availability of an OR and a surgical team, which gets tighter around the holidays.  Also, an orderly removal of a line is a low priority operation, and that is precisely how we would like to remain, thank you very much.

The excitement of the day came from Benya.  Shortly after I got home he managed to pinch his thumb in the bathroom door. He did it well and hard, cracking the thumb nail.  A fair amount of blood, a quick shot of Tylenol.  A short trip to Urgent Care got Benya's finger bandaged up and X-rayed.  At a first glance, no broken bones.  Throughout Benya cried a fair deal, though as much from fear as from pain.  Once Tylenol kicked in, he was a trooper.

Tomorrow we get to go to see our pediatrician to see what they want to do.  Hope for the "leave it alone" approach, though they might very well choose to go the surgical route.  At the moment things are quiet and (just about) everyone is asleep.

Here is the photo evidence of the trip to Urgent Care

Getting ready for an X-ray

Thumbs up!  Benya is looking at the image of his bones on the screen.

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!