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

Day +28

Today was another day of improvements.  WBC went (back) up to 4.65k and ANC reached 1790.  Hemoglobin (red blood cells) have gone up some as well.  The platelet count went down, but that is to be expected.

More importantly, today was mostly pain-free.  The morphine level was dialed back another tiny bit and this did not seem to have bothered Zevi.  According to Alla, at some point during the day Zevi announced that he is going to school and walked into the "teaching room" for school age kids who stay in the ward.  Later in the day Zevi rode a tricycle around for a little bit.

Another good day.

Day +27

The numbers; continue to hold.  The physician doing the rounds today reminded us that the short period of exponential growth of the immune system are now over and the improvements should be seen on the scales of weeks, not days.  OK.

The number that went down is the morphine drip rate - just a little, but the change that I had the docs roll back on Saturday appears to be holding today.  That is an encouraging sign.

Today was also the day of a couple of procedures.  The bone marrow aspiration (sample) went very smoothly.  Results in a week.  The other procedure was the endoscopy and gut biopsy to try to identify the reason for the pain.  That one went decidedly not so smoothly.  Jumping ahead, I will tell you that everything is OK, at least so far.  The review of live images in the gut showed no raging infections, which is always a good thing.  A sample was collected and will be sent to the lab for testing for Graft vs. Host (GVH) as well as collection of bacteria and viruses.  This too shall take a number of days.  In order to do the above the docs introduced air into Zevi's stomach (pretty much inflated him like a balloon).  After the procedure the air was supposed to be taken out, and that is the part that did not happen for whatever reason.  Zevi was delivered to mom and Grandma Rita still asleep from the anesthetic, not in pain, but with a large belly tight as a drum.  Very tense half hour ensued.  In the end Zevi passed the air the natural way, i.e. out the bottom end.  Score one for Zevi for eliminating the problem.

By the time I got to OHSU no changes were visible or palpable.  I found grandma and mom shaken, but in control and Zevi tired but in good spirits.  I hung around long enough to ensure I was not useful and went back to work.  For the first time Zevi was very visibly unhappy to see me go in spite of having mom around.  Normally when mom is around all others are chopped liver.  Clearly, today was a momentary lapse in the value system, driven by the gas and expelled just as quickly.

And that is your fart joke for the day.  Come think of it, it has been much too long since we had scatological humor on this blog.  Despair not, my gentle reader.  Once we get to potty training in earnest the jokes of bodily fluids will be abundant, I promise.

Day +26

Today was another day of the numbers holding steady.  The pain in the belly did seem better today and Zevi spent a bunch of time outside of the room, mostly traversing distances on foot.  Just as impressively he ate some mac and cheese.  About a half hour later a girl puked in the playroom, which prompted Zevi to follow suite in the privacy of his room, gentleman that he is.  The important part, however, is that the mac and cheese stayed where it was meant to for a good half hour.

At the night time Skype session Zevi was tired but playful.  It is good to hear his voice and see his smile.

Benya's update

Benya is doing well, dealing with the situation as well as can be expected.  Benya accepts that only one parent is around at a time these days and lets us switch out smoothly.  He certainly misses his mom, yet he gets along very well with all of the grandparents, especially grandma Lina who is heading back to Boston in the morning.  :-(  While saying good night tonight he said "Tell the lady (grandma's boss) that I am a good boy and come back soon!"

What is changing is his command of two languages.  He now switches between English and Russian quite smoothly.  Yesterday while riding in the van with my parents and speaking (constantly) in Russian, Benya noticed Shawna's car outside.  He got out of the van, ran up the front steps and yelled
"Shawna, open door!"

This morning Benya wanted to hang out with me for a few minutes by the giant stuffed bear (thank you, Usik, I think) while watching a cartoon on his iPad.  The cartoon was in English and involved a complicated plot of The Troublemakers (a gang of sharks) stealing a birthday present to ruin the birthday.  Kid noir action / crime thriller, as it were.  In English.  The part of my brain that was not asleep registered the content.  I noticed Benya watching intently and wondered how much he understands.  As if to answer my question Benya informed me in Russian:
"The sharks want to steal the birthday present!"

Clearly, Alla and I need a new kid-proof language.

On Sunday Benya got to hang out with him buddy Stasik.

Can you tell they are plotting and scheming?  9/7/14

A particular stage of a plan has been executed

Shkoda complete?

Drying off in the car, post-shkoda.

Secret after-action debrief

Day +25

Today the numbers improved a little across the board and there were few other changes.  There is really little else to say.  We will take boring and stable.

Day +24

Another day of few changes.  The lab numbers are treading water, so is the uncomfortable gut.  The skin seems to be healing, however - at both ends, as it were.  Now the middle has to catch up.

Not much to be added here.  Another day.

Day +23

Again, most indicators went down slightly today, except ANC which went up.  The docs say that this is within normal variation.  An attempt was made to reduce the amount of drip pain meds, but we had to bring them back up.

The significant news is that today I changed Zev's dressing, with a nurse watching of course.  It went not quite, but almost perfectly.  Not quiet, either, that's for sure.  However -- all is well that ends well, and today certainly is.

Day +22

Today the numbers stayed pretty much level - some went up a little, some went down a little.  Zevi again was talked (by visiting mom) into going into the playroom, but spent the rest of the day watching cartoons or playing in bed.  More meds were taken by mouth today.  Generally it went OK, though in one case we had to make a substitution of a rather foul tasting liquid for a tablet that dissolves in juice.

We have talked with doctors more of the future plans.  This really will be a two year marathon, G-D willing, and no joke.  We were, for example, that pretty much everybody spikes a fever and gets readmitted into the hospital sooner or later, and that is by far not the worst or scariest thing to happen.
Be it as it may, another day is over and we will take it.

Day +21

Today is an interesting day.  Exactly a month since we have checked into the hospital, three weeks since transplant, and three days in a row of ANC > 500.  The last one is somewhat of a milestone - the docs consider that a sign that an immune system is picking up.  The docs calls this "engraftment"

As of today Zevi is on two fewer antiobiotics, lower morphine dose, and starting tomorrow will be taking more meds by mouth and getting IV feeding only some of the time.

Let us bask in the glory that is engraftment.  Aaaah.  Now we are done and getting ready for the next hurdle.  A week from today Zevi will get a bone marrow aspiration and a blood draw.  The idea to look at the bone marrow as well as the genetic make up of the immune cells and to see what fraction are the donor cells what are the original cells.  Ideally, we want 100% donor cells.  At a first try that is unlikely.  What will be more important is that the second time this is done, some more weeks later, for the trend to be towards more donor cells and fewer original cells.

For the moment Zevi is feeling better though the stomach still bothers him, eating a tiny bit and talking.  A good day and an important milestone.

Day +21. Engraftment

Good news today.  With ANC > 500 for three days straight we officially have engraftment.  More details later.

Day +20

Today progress continued.  WBC = 4.77, ANC = 629.  Platelets are up as well, from 29 to 36.  Zevi felt better.  According to my dad, he would play, get tired, sit down, then play again.

While the stomach still bothers him, his voice is returning some, as well as his desire to talk.  Tomorrow night I go in for a 72 hour stretch.  I look forward to seeing Zevi in better spirits.

Day +19

Today was another good day.  WBC = 3.34 and ANC = 585, above the 500 mark.  As importantly, the platelets have gone up instead of down, meaning Zevi has made more on his own than he has consumed.

Over all energy level also continues to improve.  Zevi was in the playroom twice today.  During the Skype sessions he was playful and mischievous and has found his (loud) voice for something other than expressing extreme displeasure.  He still prefers to whisper mostly, but now he can yell just because it gets a rise out of mom.

With news being good the spirits are lifted as well.  We continue to enjoy each day's improvements, one day at a time.

Day +18

This was another day of progress.  To quote a famous NPR program, "first, let's do the numbers".  WBC = 1.57, ANC = 420.  Weight of 14.7 kg, all other numbers well within the normal range.  Also, today Zevi played and, more importantly, ate.  Some apple, two Popsicles, one or two cookies.  Not much in itself, but a big step.  The through-the-tube feeding is going to be reduced to entice Zevi to eat more.

Today I finally have gone in for a visit.  Zevi is rather a different kid from last time I was at OHSU.  He met me with a big Zevi hug, played with mom and Grandma Rita, enjoyed spending time with me as well.  Blackout order on images of Zevi continues, though in my view he does not look half bad.  I hope it gets lifted soon.

Grandma Rita and gets special kudos to supporting Alla during the extra-long stretch at OHSU.

The cards and gifts keep pouring in - thank you!  The toys are really starting to take over the room and some were sent home - we simply do not have the space nor hours in the day to play with everything.  The new cards are going up on the wall shortly and I will post another picture of the 'wall of good wishes'.  One card / poster, however, deserves an image all it's own for the sheer scale and artistic value.  The banner is around six feet across and took Alla and I (and two very nervous nurses looking on) to hang.  The team from GP Strategies took Super Zevi theme to the next level.  Thank you, guys.

Super Zevi takes flight 9/1/14

The awesome banner now flies above the bed, immediately visible upon entering the room.


Benjamin and I took our third trip to OMSI in as many days.  We saw the dinosaurs, we played, we (hopefully) learned.  Then, rather in lieu of a nap, we shared a quite afternoon, Benya on his iPad, me on my Kindle.  I do believe this is my first selfie ever.

Three bears, 9/1/14

Day +17

WBC are up (0.9) yet ANC (neutrophils) are down a little (239). Gut still hurts. Retaining water some, which is to be expected. The rest of the CT scans were declared clear. No huge fevers.

This was a good day.  Alla reports Zevi spending over an hour in the play room, walking around on his own for a chunk of it, playing.  He continues to improve on all fronts.  Another good day is over.