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!

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.

Day +78

The day went well, with Zevi eating decently and the gut mostly cooperating.  Zevi continues to have "piles of energy" - his expression.  While Zevi did not get to go trick-or-treating, he did put on a costume and pose with Benya:

Brothers posing, 10/31/14

Now we are getting into the spirit of things!

Zevi and I got to hold down the fort and even greeted a few trick-or-treaters.  In the mean time, Benjamin got to go on a conquest of Hillsboro:

I shall rule!

Checking that the helmet is on.  Safety first.

Are you with me?

Onward to glory!

Day +77, evening

Just a brief update.  We are all home, the boys are asleep and we are about to follow suite.  Zevi had tons of energy and the boys did great playing together.  Moving on.

Day +77, evening

Just a brief update: we are all home, kids asleep and we are about to follow suite.  The boys did great playing together tonight and Zevi had energy to spare.  Moving on.

Day +77, morning

The night went much better.  With Zevi eating decently and drinking very well, he was taken completely off IV hydration, so no constant peeing at night.  He still got woken up plenty by having his vitals taken, yet it was a marked improvement.  This morning WBC, HGB, and platelets are all up a little bit.  The Neutrpphil count went down a little more, but the docs are not worried - the fever has not returned and things - at this point - look like a virus.  Mom and Zev are expected to head home around noon today.  At 8am or so, when I was talking to Alla, Zevi announced that he has "piles of energy."  A good start of the day.

Day +76, evening

Saw Alla and Zevi tonight.  After a long afternoon nap both were in good spirits.  Zevi played and was communicative and full of energy.  Alla and I enjoyed a birthday meal of delicious barbecue and toasted with a small but fancy box of wine.  You heard me - I said "box of wine."

Here is hoping for a good night and some good news tomorrow.

Day +76

Today the lab numbers went lower still, but the fever stayed away.  We hope that the white blood cells in general and neutrophils specifically are not in the blood stream because they are busy kicking bacterial ass.  Zev's energy has been good so far; he spent time in the play room and the school room.

Zev is scheduled for another bone marrow aspiration and a chemirism test on Monday.  Those tests will tell us more definitely what is going on.  As things stand right now - provided the fever stays low and the blood cultures do not grow anything bad, we should be going home tomorrow.

Day +75, back in

Today Zev spiked a fever right during the weekly checkup and was admitted back into OHSU.  The blood work numbers have dropped significantly as well.  At this point the root cause is unknown.  The likely culprits are either a virus or a bacterial infection in the central lines.  The line infection does not automatically guarantee that the line has to come out.  Should the bug respond well to antibiotics, they yet may prove enough.

Upon admission Zev was put on two antibiotics and the fever broke.  Right now he is at the hospital along with mom.  Benya and I are at home and will keep everyone posted.

Day +68

Recent few days have been an improvement.  Zevi's stomach has been better and last night actually resembled decent sleep - till 5 Zevi was in his bed and we were in ours.  Zevi did finish out the night in our bed, but it was still a win.

The blood work numbers have been better as well.  HGB (red blood cells) have stayed largely the same; WBC (immune system cells in general) dipped a bit last week and moved up now.  ANC (neutrophils, cells responsible for fighting infection) dropped sharply last week - which, doctors told us, is actually not bad.  If they are not in the blood, then they are somewhere else, presumably kicking a virus' behind.  Now Zevi is feeling better, eating a little better, and netrophils are moving back up.  Platelets (responsible for blood clotting) dropped a little last week and today they reached 119k, which is the highest still since transplant.  In fact, highest we have seen them for a long time.

Zevi is solidly into the "why?" stage, asking for explanations for everything from cars to clouds.  Benjamin continues to learn English.  Both are alternately cute and infuriating.  In other words - pretty normal for a brace of three year old boys.

These have been tough days, but things have been improving slowly.  We will take it.

Zevi's TV appearance

Here it is
http://www.kptv.com/story/26821088/dream-drives-for-kids-give-kids-the-drive-of-their-lives

more on the Sunday's drive

With permission, a few more images from Sunday

With Amity and Eric Peterson

Before the drive we agreed that Zevi will give "thumbs up" for "everything is OK".  Instead, Zevi showed "number one".  For the rest of the drive, whenever Eric pulled up level with the follow car, he showed us "number one!" and off they went.  See for yourself below.


Here is an awesome video that Eric and his son put together:
https://www.youtube.com/watch?v=ko6-nZnKAGU

Again, out heartfelt thanks to Amity and Eric Peterson for making this happen.  If you haven't yet, please check out their page and share:
https://www.facebook.com/DreamDrivesForKids

Day +62

Last three days have been a mixed bag.  On Monday Zevi spiked a 100.4 F (38.0 C) fever, just high enough to set us off to OHSU.  A quick check confirmed the same virus that has been bothering Zevi's gut is also causing a runny nose, a little cough, and the fever.  The fever, it must be said, went down below the 38.0 mark almost immediately.  Zevi was given antibiotic, fluids, and we were sent home.  Truly, no reason to complain - a virus, annoying as it is, is a much better option than gut GVHD.  During the Tuesday clinic appointment the diagnosis was confirmed and the blood numbers remained largely unchanged, though the platelet counts went down a little.  Today Zevi has been feeling better and ate some.  Progress.

Tonight we also have Benjamin back at home, finally.  Having both boys here is both exciting and tiring.  They have fun playing together; naturally there is also conflict and feeding off each others' craziness.  Parr for the course.

Day +58

The weekend was a mixed bag (with a healthy dose of awesome - keep reading).  Over all - nothing bad happened.  The dressing change did not involve an overdose this time, went OK, was just stressful in getting set up.  Zevi was anxious, I was anxious and growled at everyone - not pretty.  In the end we all pulled though and got it done.

The gut continues to bother Zevi.  The on-and-off diarrhea has been going on for two weeks now.  Mercifully, no real fever, no blood in the stool (so maybe it is not GVH - we hope) and Zevi has been drinking enough to replenish fluids.  In the mean time Zevi has not been eating well at all.  We got some dairy into him today, which was good and nutritious but upset his stomach further.  We will continue to search for foods he will eat that will agree with him.  Energy level has been pretty low as well - not too surprising for someone with upset stomach, I guess.  The (lack of) sleep and iPad addiction both continue to be struggles.  Through all that - it is another weekend at home, so I suppose I should be grateful.  Things could be worse.  We did manage to drag Zevi to a track last night.  He ran a little and rode dad's shoulders to two laps.  Mom and dad got to jog too.

Benjamin spent the weekend with the grandparents.  His runny nose is pretty much done, but we are being careful and, frankly, happy to have just Zevi with us - he's been challenging enough.  Benya did have a pretty busy social schedule of his own this weekend: Lego building class and two birthdays.

Yet the real highlight of the weekend came compliments of a very cool crew of car enthusiasts:

https://www.facebook.com/DreamDrivesForKids

We want to thank two wonderful individuals who shared their time and love of cars to give Zevi a chance to ride in a remarkable car this weekend.  For those who appreciate cars: Zevi rode in a midnight-blue Mclaren mp4-12c, 625 hp "spyder" model.  For those who don't: this is a real supercar, it is every bit as awesome as it looks.

Zevi loved the car from the get-go.  After seeing the gull-wing doors he asked: "Does it fly?"

Did it ever!

In front of the McLaren, 10/12/14

He's ready

Modeling the car

After the ride dad got to sit in it too

While Zevi was riding this beauty, I was in the "follow car" - the 2015 BMW M4, an awesome car in it's own class.  More pictures later is the two kind and modest individuals give me permission to post pics of them here. In the mean time - Thank You!

Day +55

Today was another good, important day.  The good important news of the day was that the second chimerism test showed 100% donor cells again!

For those who care: Chimera is a creature in Greek mythology comprised of many animals.  Since the recipient of BMT now has DNA of two people, the test to see whose DNA is in the blood is called "chimerism."

The blood test numbers are essentially unchanged - platelets a tiny bit up, WBC and ANC a little down, HGB also a tiny bit down, pretty much within range.  Also, we now have a schedule for ratcheting down the dose of the immune suppression drug.  In other words - we are moving forward.

The diarrhea seems better today, but sleep is getting worse.  Last night between 10 and 3 I was in Zevi's room every 45 min, give or take.  At around 3 I growled at him hard and bought us another hour.  At 4-something Zevi decided he wanted to sleep on the couch with me.  When I promised a timeout instead Zevi called for mom specifically and got her.  It is hard to tell to what degree this is a control exercise and to what degree there is actual discomfort.

Benya is still with the grandparents for the weekend, which leaves us free(er) to do battle with Zevi for something resembling normal sleep.

This night is an improvement already - it is 11:30 and I have not been in Zevi's room yet.  Let's hope he gives us a break tonight.

Day +54

Last couple of nights have been a little tough with Zevi waking up periodically with an aching stomach and needing a diaper change at some point during the night.  The good news: OHSU do not think it is GVHD (wrong color and smell of poop, no kidding) - which is great news.  Now Zevi has to defeat the rotavirus which we know he has.  In further hopeful news - no diarrhea today, so here is hoping.

Sorry if this has been entirely too much about diarrhea lately, but hey - that has been the name of the game lately.  Through all this Zevi has been cheerful if somewhat less energetic.  I imagine, if I had periodic explosive poops at random intervals ranging from 5 minutes to few hours I would not be a happy camper either.  So, for a change, Benya now has a runny nose and, thankfully, no fever.  Just the same, he and I are preemptively isolated at grandma Rita's and grandpa Tolya's.  While grandma Rita swaps in to spend the night with Alla, or namely to let her sleep in the morning if the night is rough.  Let's hope everyone gets a decent night's rest.

Day +52

Another Sunday is over.  It was a hectic, yet over all a good day.  Zevi ate a couple of decent meals and Benjamin ate a couple of monster ones.  Zevi's diarrhea continues on bouts and that takes his energy down.  However, he drinks a lot which is good for compensating for the loss of liquid.

Around 11am I took Benjamin to the track at a nearby school and we jogged.  I would run my lap and Benjamin would run out to meet me towards the end of it, half the time to spit some fresh water on me (from the bottle).  Guess he was keeping me cool.  In the afternoon we make home made bubbles.  Did not get any truly gigantic ones, but we did not have the perfect gear either.  We did produce a few spectacularly long "tubes" and some very large bubbles.  I might be game for cooking up another pitcher of the brew next weekend.  In the end the boys make a complete mess, of course, and were covered head to toe in soapy water.  Which was perfectly fine - it was a warm day.

Zevi's gut continues to bother him.  We are not quite sure whether this is due to the virus or residual pain from the effects of the chemo.  So far we have only had to use Oxycodone once - the pain is usually not severe and not long-lasting.  We will keep our eyes on it.

Good week to all!

Day +51

Another day is over.  Today we changed Zevi's dressing all by ourselves for the second time.  Everything appears is order, certainly, let's hope we did as clean of a job as we intend to.  What makes this change different from the previous one is this: today I did not screw up the Ativan dose.  This is of them "all is well that ends well" stories; funny, but only retrospectively.

Last Friday in preparation for the first in-home dressing change we decided to give Zevi Ativan.  It is an anti-anxiety drug that has been given to Zevi plenty of times at the hospital.  It also has nice anti-nausea effect, so we have a bit of a history with it by now.  Since we have been home, however, we have not had need to give it.  Unlike other meds that we can doll out in our sleep, this one I had to look up the dose for.  In short, I read the concentration instead of the dose and measured what was eight times the amount.

To be sure, at dressing change Zevi's anxiety was right up there - you would not tell he had any meds for that, let alone an overdose.  Things did get positively weird about another 90 minutes later, at bed time.  Zevi had a bit of trouble recognizing us.  He asked once who was there, while pointing at a row of loyal teddy bears.  He asked why the toys were flying, then he asked why daddy was.  Or why was there a tree, while pointing at the wall.  You get the picture - the kid was hallucinating.  Both Alla and I were more than a little freaked.  Around that time I checked the dose and realized my error.  Alla took over by Zevi's bed and I called our awesome nurse.  Just as Zevi asked Alla why was there a river down there (on the floor), the nurse told me to get Zev to ER and we were off.  By the time Zevi was in the car he knew exactly where he was and where he was going.  He just asked when will mama come to the hospital.  For my part, I got to do steady 80 mph on I5 while periodically checking on Zevi.  Zevi was not longer sleepy and perfectly game to look at cars, call out the lights, count in English and Russian and recite the family tree.  In the mean time Alla contacted OHSU and they were ready for us.

Once we got to OHSU ER the story, honestly, gets boring.  By that time Alla has called me back and told me to quit rushing - the on-call physician and Oncology assured Alla that Ativan is safe and washes out of the system quickly.  The only risk is slowed breathing so we are only going in for observation.  We were allowed into our private box in ER very quickly.  Zevi was checked over and hooked up to monitors.  Having three extra wires attached got him upset and his vitals (heart and respiration rate) were by no means low.  Oxygen saturation and blood pressure were perfect.  At that point mom arrived and we got to waiting.  We stayed in the ER until the 4 hr post-ingestion mark.  At that point we were checked over again and sent home.  Entire visit was 90 minutes and everyone was asleep in their own bed by ten past midnight.

Dangerous?  Certainly.  Funny?  Possibly.  It was to us in retrospect.  Will I ever live down the fact that I messed up the dose and got my kid high?  Not a chance.

Day +46

The weekend was not exactly easy but not bad.  The dressing change on Friday night was not without it's own adventures, but it is done.  Tomorrow is another clinic day.

The sleeping continues to be somewhat of a challenge.  Recently Alla came to the conclusion that Zevi is entirely too attached to his iPad and it is interfering with his sleep pattern.  So, Saturday we have gone pretty much cold turkey.  This did not improve the atmosphere in the house, but Zevi does seem to be doing better with this and - let's hope - sleeping better.

And speaking of atmosphere.  Yesterday Zevi got the runs.  A day of liquid poops by itself is not a concern in a three year old.  However, in a BMT (Bone Marrow Transplant) patient is can be a sign of something more serious.  The good news was that Benya has similar symptoms.  Yes, good news - because it quite likely means a stomach virus, not Graft vs. Host.  OHSU told us to watch and hold as long as there is no fever.  There isn't.  Today there is some more pooping a couple of sore butts.  Hopefully the folks at OHSU agree that this nothing more than a stomach thing.

Also yesterday I went for a late night walk with Zevi and he walked by himself more that he would have been willing to a year ago.  Let's take that as a good sign.

releasing the hounds. errr, poster

I know that everyone reading this knows the story.  Still, this is another outlet to release the poster, to start the campaign, so I am going to use it.

After our son Zev was diagnosed with JMML earlier this year Alla and I spent some time with typical, useless questions such as "Why?" and "Why us?". Why anybody? There are no answers. At least none that I can see as yet.
One of the many things that changed for us was awareness. We were tremendously fortunate to have found a donor for Zev in the International Bone Marrow Registry. One thing we can do is ask people under 44 to sign up and pass on the message to others. If you can - please, print the poster and post it where people are likely to see it. Universities, companies, gyms, stores. Post it, share it, pass it on.
The poster was created by a very gifted and generous artist, Andrea Kirchhoefer.
If you want the file in a different format or form factor, contact me at daniel.m.kaplan@gmail.com and we will see what we can do.
Thank you!

Yes, damn it - it is meant for 11x17, original size posted here to preserve the resolution.

Day +42

Another tough night, another good day.  Zevi has gotten so used to having us around that somewhere between 4 and 6 he decides that he wants to hang out, and possibly snooze some more, but with us in the same room, preferably in the same bed.  When we disagree the debates turns somewhat loud, which upsets all parties.

The (not) sleeping business aside, today's labs were good.  Neutrofils crossed 2000 and the rest of the key indicators are at least holding.  Zevi ate today, at least decently.  I have heard no major complaining when I got home.  Alla was completely wiped, however.

Day +41

Today was good day.  Zevi ate well and had energy.  While mama took Benya to the synagogue for Rosh Hashanah (New Year) services, I got to hang home with Zevi.  I was told Benya looked real cute in a large green kippah and enjoyed the family services.  Zevi, in the mean time, got to asking some cool questions, among them: "Why does the sun set?" and "Why does the heart beat?"

On a good note, a sweet, healthy year to all and a good night.

Day +40

Today Zevi had a clinic check up and it was boring and good, thank G-D.  Platelets are at 99, netrofils 1710, HGB 11.5, WBC 5.86.  All good results.  The docs took a good look at Zevi and chased him and Alla out of there.

Today was also the first time the boys saw a Disney movie, beginning to end.  It was Frozen in Russain (legit copy from Russia, if you must ask).  They set through the entire thing, mesmerized.  Peace reigned upon the household for over and hour and a half.

The night time routine is slowly being tamed.  During said routine, Alla asked Benya what was it he liked the most about the movie.  "Girls", replied Benya.  "Which one, Anna or Elise?"  Without missing a beat Benya replied "Both."

Day +38

The first weekend with all four of us at home in a long time.  The first trip to the park in a long time.  Also, the first couple of nights of us figuring out the routine.  Things are a bit chaotic, but we are learning.

The nights are still tough; the weekends are tougher in general - at least for me - because we have both boys.  On one hand, they feed off each other and go crazy(er).  On the other, we have no choice but to limit the level of rough play and this applies to Benya much more.  I should also note that Zeva is getting stronger and, hopefully, things will get better and stabilize.

Tonight at bedtime the boys were drinking juice out of boxes.  Benya looked at us and said: "I want to clink (glasses)."  We replied that since Zeva was the only one with the drink, so Benya could clink with him.  Benya then proceeded to ask "What do I say?".  We told him "Bud' zdorov - Be healthy".  The boys then to clinked boxes several times and wished each other health back and forth.

The weekend is over and we are getting ready for another week.

Day +36, good news continues

The night was rather rough.  I was summoned around 3am and promptly informed by Zevi that I am chopped liver and he wants mom.  Poor Alla spend 1 hr 40 min in the boy's room, some of that time having a debate with Zevi about the wisdom of going downstairs.  Feeling (more than) a little guilty Alla told Zevi that going downstairs is not allowed while hooked up to a pump.  Zevi reasonably reminded her that he has, indeed, been downstairs earlier while already hooked up to a pump.  In the end Alla won by endurance and finished the night out in our bed.  Only to be woken at 6:45 to change the diaper, the pants, the bed sheet.  That smoothly morphed into unhooking the TPN and flushing the lines and then it was time to start the day.

Today Zevi had a clinic visit, one of two (at least) he will have every week for the next couple of months.  The numbers continued to improve: WBC = 5.25; ANC = 1360; Platelets = 70, HGB = 11.4.  In other words, Hemoglobin at healthy levels, WBC and platelets at a new high, and neutrophils pretty much holding steady.

The much more important news came with test results: all clear!  Specifically, the bone marrow results look good and the chimerism test (looking at whose bone marrow cells are growing) showed 100% donor.  Does not get better than this.  To be clear; the test has accuracy of 1-5%.  The result is for today and the trend needs to hold.  Next test is in a month.  It appears the current sprint has gone magnificently.  Another bit of champagne is in order before the next sprint begins.  Likely around 2am tonight, with preemptive diaper change.

Tonight Zevi also bathed in the bath, for the first time in good three weeks.  This too was met with stern opposition, since it involved touching of the tubes (to protect from the bath water with a plastic film).  While Benya was being bathed, Zevi told my dad downstairs: "My tummy hurts, therefore I cannot bathe!".  As soon as my dad said "fine, stay here and play with the iPad" the tummy ache was forgotten.

In the end everyone was bathed, tired, and in bed a little earlier today.  Perhaps I shall follow the boys' good example.

A truly excellent day.  Thank G-D and a great weekend to all.

Hanging out with dad by the big bear.  9/18/14

Day +35, evening

So, we are home!

The numbers today did the same mostly-hold-steady thing, which is fine.  Zevi had plenty of energy and was caught up in the excitement of heading home.  It took over two hours to pack up the room, get the meds (one and a half rather hefty bags), go over procedures, sign the discharge papers and leave.  Zevi tooled around the ward on a tricycle and pulled his own (lightly loaded) cart out the door.  He's ready for labor, right?  The cart Zevi was pulling, by the way, was the 5th one.  Substantial share of the other four carts was taken up by gifts, toys, and cards that everyone has sent.  All of them are at home with us.  Every one.  Thank you everyone for your amazing support.  It has meant more than we can express.

Special thank you goes out to Grandma Rita who helped us pack and, as soon as we got home, got to cooking for Zevi (and the rest of us too).  Also, thank you to Grandpa Misha who has been invaluable entertaining the boys, whether one at a time of both at once.  Today they had a wonderful hide-and-seek game.

The brothers were delighted to see each other.  Zevi gave Benya a huge hug and they immediately went off to play together.  Which was handy, too, as at the same time we were being visited by a wonderful nurse who was training us in setting up Zevi's night time feeding over the central line.

The night time routine was understandably hectic.  At this point it is full 70 minutes past the usual-late bed time.  The boys appear to be asleep and they gave me permission to go sleep only recently.

At this point we are going to have a sip of champagne and get some shut eye.  Good night all and thank you for your support!

Day +35, around 2pm

Alla wrote this, I need not alter one word...

Home!!!
We are heading home! Zevi is so excited, commenting on everything he sees from the car. Showing dad the right way to go. 45 days in the hospital, finally home for Zev. We are excited and nervous at the same time. Zevi's journey to health continues...

Day +34, evening

The day went well.  Zevi continues to be off IV pain meds.  Oral pain meds were taken once and tolerated well.  Zevi also ate a little.

If all goes well we might be going home Thursday.  We shall see.  A good day.

Day +34, morning

Yesterday was another day of slow progress.  Also, it was a day when Zevi threw up his NG tube, stayed completely off pain meds, ate something resembling a dinner and rode a bike a little.  On balance, it was a good day.  The tube episode took place during an attempt to retape the tube down.  The tube moved, produced gag reflex, and up it went.  It happens.  Upon careful consideration, it was decided to leave the tube out for the time being.  The amount of food needed to take oral meds it really rather small.  Perhaps we can manage to taper off IV feeding at home and manage without the tube entirely.

Today the numbers are actually worth mentioning.  WBC 5.25; ANC 1360; Platelets 70; HMG (hemoglobin – red cells) 11.4.  Not half bad.  Thank G-D.

Day +32

Today the numbers continued to improve at a modest pace or at least stay put.  The pain med setting is the lowest possible.  Perhaps more importantly Zevi is tolerating the feeding tube well.  An X-ray confirmed it is in the right place an a tiny bit of food was delivered through it - and stayed there.

Should things continue on this course there is even talk of sending us home some time this week.

Day +31

I skipped yesterday's update due to combination of circumstances - Zevi requested "lights out" at bed time, the laptop needed charging and I did not want to fiddle with the cables in the dark.  Everything is OK.

The numbers have pretty much remained unchanged in the last two days.  Zevi's level of energy, over all, continues to improve even if I am not successful in getting him out of the room much.  He spends more time upright, playing, wrestling with me, talking a lot.  On Saturday he ate a few bits here and there.  Not enough to count it as real eating.

The weekend was dominated by two relatively minor procedures.  On Saturday I got another chance to change a dressing.  This time it went better - I did not draw blood.  There is much to be learned by me still in terms of efficiency, but I have the basics down.  Zevi is a cool customer in a sense that only one other person is necessary to control his arms.  He objections are vocal, but not too physical.

The other procedure was today.  Given Zevi's lack of interest in eating, we gave the OK to put in the feeding tube.  The said tube is a very soft rubber affair that goes up the nose and down into the stomach.  Once there, it is not painful and does not prevent normal eating.  The process of putting it in, while not painful, is not pleasant either.  The whole experience is something both Zevi and I could have done without.  And that is all I have to say about it.

Another day (two since I last wrote) are over.  I am rather glad to see the tail end of this particular one.

Day +29

The numbers today held steady.  What was important is that, in spite of the reduced pain med dose, Zevi has done well with pain.  He still gets nauseous after he eats - or when moron dad decides to exercise him right after taking meds - but recovers quickly.

Also, the biopsy results are in and we are all clear.  No GVH, no viruses, bacteria of fungi.  Just a gut taking some time to heal.  The very first of the bone marrow results came back good, but we will need to wait till Thursday, I think, for the proper analysis.

Another good day.  Thank G-D and amen.

Oh, and I was given permission.  Today some more superheros stopped by, so here is a group shot.

Superheroes at work

Some random pics

Per Alla's request, a few more

Also from 9/7/14, Stasik and Benya watching something intense.

Watching the water at the park.  5/3/14

Video from later the same day