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.

Day +186

This weekend saw an interesting milestone - 6 months since the transplant.  We made it, we breathed, we had a glass (or three) of wine.  The boys were with their grandparents who gifted us with a night and following morning off.

Now back to regularly scheduled programming.  Zevi continues to limp - over a week now.  The going theory is that he has a hairline fracture so small it does not show up on x-rays.  Mostly it does not bother him, and when it does we treat with Ibuprofen.  Sleep is very hit and miss.  One night I get a merciful two trips to the boys' room, and some nights it is much less merciful 6-8.  More of the former kinds of nights, I hope.

Life goes on.  Zevi enjoys his Lego class where do try to keep the boys separate for everyone's sake.  His energy and appetite seem good, thank G-D.  So it goes.

Two weekends ago the boys had an absolutely awesome experience blowing glass!  More details and pictures coming, I promise.

A visit from a SF friend

A bit less then two weeks ago (man, it feels longer) we had a visit from a SF friend who we have not seen in over five years.  His name happens to be Zev, he is single, fun guy who bravely stepped into the den.  How traumatized Zev was in the end is hard to estimate at this point - he put on a very brave face.  The boys, however... well, see for yourselves.

Upside down Benya and Zev looking a little bewildered.  2/2/15

Getting used to it now.  Zev and Zev.

Years of training on dad are being put to good use.

Truly, Zev was an amazing sport the entire weekend.  The boys loved having him around, as did we.  Come back soon!

Seriously, Alla's back hurts, I am tired, someone needs to wrestle with them - come back soon!

Day +172

Just a quick update: the fifth Chimerim test showed 100% donor!  What a relief.

Back to scheduled programming.

Day +166

Been a couple of weeks.  Been busy couple of weeks.

Important things first.  Today we had a clinic visit which went well.  HGB is up, which is great.  WBC are a ted lower, essentially flat and Neutrophils are up.  The platelets are down from a month ago - from 306k to 238k.  The monocytes are a up a fraction as well.  Both, however, are within the normal range and the slight increase in monocytes can be explained by a bug Zevi is getting over.  The doctor said she is not concerned at this point.  Regardless, blood was drawn for the Chimerism test and in a week or two we should know better.

Another bit of news is sleep training.  After basically not sleeping at all we visited the sleep clinic and were instructed to perform sleep training.  Right around that time Benya had a virus and was banished to Grandma Rita.  Then Alla got a sore throat and was banished as well.  I used the opportunity to get to work.  Four very, very miserable night followed.  The result, however, was almost a week of Zevi sleeping much better, with me coming to his room at most twice a night for a minute to cover him up.  These days he sleeps well roughly every other night.  On the nights when Zevi does not sleep well, things are still a bit better - there is less screaming, more of me coming over and telling Zevi to get into bed, which he does, and even covers himself with his favorite blanket.  We are not done, but things are moving in the right direction.

Another bit of amazing news: our donor wrote back to us!  We now know he is a senior in college and by all indications is a great guy.  Both he and all of us cannot wait until we get to talk without limitations and, eventually, meet face to face.

Finally, last weekend Oregon served up some amazing weather and we headed to the beach.  Great company, a warm bright day, no wind at all.  The boys got to play in the sand, run around, met a few dogs.  It was great to watch them go crazy (ok, up to a point) and especially good to see Zevi have energy to spare.

The language and cognitive (cleverness?) skills continue to grow too.  Benjamin talks up a storm, as always.  He often greets me with a hug and says "Papa, you are my friend!"  Benjamin also refers to hugging and reminders of friendship when he feels he is about to be in hot water.  I helps him about a third of the time.  Zev recently provided this bit of fun: Alla and I were out and Grandma Rita was putting the boys to bed (thank you!).  Per out request she gave him only a bit of juice at bed time.  Zevi, as usual, demanded more.  Rita tried to argue that, in fact, Zevi has a lot of juice.  Zevi demanded to look and was told that his bottle contained more juice than he could actually see.  At that point Zevi suggested they pour out the juice into a clear cup and take a look.  At that point, I believe, Zevi got a well-earned increased allotment of juice.

Day +150

Friday was another day of good news.  Easy to share.  The fourth Chimerism test came in at 100% donor - hell yea!  We are now officially on monthly visits.  Further, Zevi appetite has been returning.  All good news.

Zevi also got to experience his first Lego class.  Benya only said about 5 times "I will show you, brother!"  By the end of the class the teacher was visibly worn, the boys caused only mild havoc, but they did build what they set out to.

Sleep does continue to be a challenge.  Zevi asks to be covered, migrates to the couch and back (with entourage of blankets, pillows, juice bottle, one dragon, and one sleepy/pissed parent.  Tonight at bed time the boys could not decide who should sit with them for five minutes.  So, I suggested that instead they tuck mom and me in, and sit with us.  Zevi was having none of it, Benya looked like he might go for it.  Now, if I could get Benya to tuck his brother in 4-5 times per night, we'd be set.

On Saturday Alla and I got a night off to celebrate New Year according to the old Russian calendar.  Never done it before, but it was a chance to get away - compliments of grandma Rita - so I am all for weird traditions all of a sudden.  It was a nice night, great company, good music, a chance to see an old friend in action on stage.

Another "first" I'd like to share.  On Saturday we took Zeva to sushi.  Come to think of it, it was the first for him since transplant, but that was not the first I was talking about.  For the first time ever all four of us ate at the sushi place and did not leave a pile of food on the floor.  It was good to leave the place and not feel like I had to apologize to the staff for the terrible mess.

On that note, let me leave you with the wishes of a good week.

Day +141

The recent two weeks have been good, if not perfectly smooth.  The recent blood numbers have been very good - ANC 5300, HGB 11.0, PLT 306 - new record.  WBC is 9.77 - the high side of normal, consistent with someone finishing off a viral cold.

Due to the same bug Zevi's eating has been varied.  Sleeping - don't even start me on sleeping.  Alla and I either split nights or one of us takes a whole one to give the other a break.  Stomach is functioning, but with occasional rumble, literal and figurative.  It is this "occasional" business that somewhat drives us nuts.  As the doc said, now that the immune suppression is over, if we are going to see GVH, we will see it in the next few months.  On top of that, we watch for signs of the way things were before the transplant, such as low fevers, not-eating and being tired.  Rare conditions for a toddler, right?  So, every loose stool, every day of poor eating raises an inevitable question of "is it GVH?  Do we scope him?"  On a rational level it is clear that a three year old whose food restrictions have been lifted recently will eat all manner of things and an occasional upset stomach is to be expected.  What can I say: in the language of computer games, we passed the "rational" level long ago, ran straight through "slightly off," entered into "straight up crazy," exited that into "barely keeping it together" which we regularly leave for a an extended stay in "sleep deprivation induced psychosis."  And that, my gentle reader, I want to make clear - is not me whining.  So far, we have done extremely well, things are going smoothly, and I have truly nothing to complain about for the 141 post-transplant days.

So let me leave 2014 with the following thought (and boy, are we ready to leave it!); it was a heck of a rough year, yet somehow I have reason to be very, very grateful.  Unlike some others, I do not do optimism, so this is as close as I get to being hopeful.  One more thought; thank you for being there, sticking with us, reading this.  Thank you.

We are ready to move on.  Blood sample for the most recent Chimerism test was drawn on Tuesday we are waiting for the test results.  One day, one test result at a time.

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.