Day +16, morning

Alla just notified me: this morning white blood cell count (WBC) is 0.66 and we have Neutrophils (ANC) = 298! 

Moving right along.

Day +15

Today was a mixed bag.  On the positive side, the white blood cell count went up to 0.32.  On the negative side, spikes of fever continued, now for seven straight days.  Fever itself could be a good thing or a bad thing.  Could be a sign of engrafting.  Could also be a sign of an infection.  To that end, tomorrow Zevi will receive a CT scan to see whether there is evidence of a fungal infection.  Bacterial and viral are, at least part way, screened for by analysis of the blood.  And speaking of blood - various indicators other then temperature looked good today.  Zevi's voice is still mostly gone and mucus is still being produced and spat out.  Both might be getting a tiny bit better.

Zevi does continue to sleep a great deal, but the docs do not seem alarmed by that so far.  The over all energy level today was pretty low, but during the night Skype session Zevi's mischievous nature shown through a little and his grin made an appearance.  Mom is holding on.  Another day is over.

Day +14

Today the white blood cell count dropped a little, to 0.120, which is to be expected.  Zevi continues to bring up mucus, occasionally spike fevers, and sleep a great deal.  On the flip side he went to the play room today and played for 30 minutes.  When not totally sleepy, which, admittedly, is a lot, Zevi is alert and engaged.  My parents came over very late last night and were amazed at the change from even a few hours earlier.  So, we continue to take things as they come.

On the sucky front I seem to have developed a little bit of a runny nose, which makes me persona non grata at OHSU.  Alla, I am pretty certain, was looking forward to a three day break and feels like an astronaut who was told that the relief space ship is not coming and she is to remain in orbit.  In truth, Zevi will not let anyone else replace mom by his side, which means I have to get well in a hurry and start my shift at OHSU.

Day +13

Today the white blood cell count remained unchanged, which is good news.  The WBC is known to fluctuate, so even a reduction in count would have been normal.  No change - we will happily take it.  Zevi continues to do a little better, heal a little more.  He took a nice 6+ Benadryl-assisted nap today.  When he woke we Skyped from home.  We got to see a little of his smile, he got to see his brother, grandparents, and dad.

Over all - another day of slow improvement.  Thank G-D and Amen.

Day +12, evening

No major news.  Zevi continues to feel better in spite of mucusitis.  The skin on his behind seems to be healing as well.  Zevi also shows more interest in things around him and asked today for apple juice.

In the mean time Benjamin and I got to hang out.  Benya rode around on his scooter, we fed the ducks, met some nice people as well as a few dogs.  Then Benya had some cake and lemonade and we headed home.

Child labor being used to clean the deck.  8/24/14

More Benya working.

Day +12, morning

Today Zevi has non-zero white blood cell counts.  Only 0.16, but it officially a measurable value.  Let's hope it keeps going up!

Day +11

Just a quick update today.  No major changes.  In Alla's estimation Zevi continues to feel a little better.  He also slept a lot, no doubt making up for the weekend.

The Boston grandparents visited Zevi today.  Grandpa Misha did not waste an opportunity to teach Zevi, this time about the GPS.  Zevi was game to learn and certainly wanted to push the buttons.

Over all - another day is over and we are grateful.

Day +10

The vast majority of the day, frankly, were crummy.  The break was towards the very end of my stay at OHSU.  In order.

The numbers: white blood cells continue at zero.  Platelets and red blood cells are transfused daily or every other day.  Kidney and liver indicators are rising.  Still within the normal range, but near the upper edge of it now.  Either way, the only thing that can be done for kidneys and the liver is making Zev pee, and the pee medicine was tripled today.  It is having affect - Zevi is not retaining water.  He did for a day or two, and trend is reversing.  Small, short fevers come and go.  Tylenol was given once or twice and took care of it.  This too is normal for someone getting blood products on regular basis.  Those of the highly optimistic persuasion may see this as a first sign of the new immune system working.  Or it could be small infections flaring up and being suppressed by antibiotics.  Blood goes to analysis (culture growth) regularly.  Nothing so far, yet this is not a reason to relax - cultures take up to four days to grow.

Over all condition: most of the weekend it was weak, all as expected.  Diarrhea is mostly gone.  The skin looks better, I think, though no real healing can happen without white blood cells.  The intestine still seems irritated and the mucus coming up is what seems to be bothering Zevi.  He spits it out, a lot.  Swallowing hurts.  If he sleeps - he does not spit, which in turn means the stuff accumulates and makes him more nauseous.  As you can imagine, between the spitting and the pee medicine, sleep was in short supply both night and day.  Quite frankly, one rather healthy adult was also tired, beaten, and unresponsive by mid Sunday.  Most of Zevi's hair is gone, but the process has stopped and, at least for the moment, he seems to be retaining a fuzz.  I do not yet have permission to post pictures.   Stand by.

The break came Sunday night, just after Alla came back to the hospital.  Zevi was just waking up from a Benadryl-induced nap.  Suddenly he became alert, more energetic.  He played with mom and I saw him smile for the first time in 48 hrs.  He then proceeded to perk up some more.  By the time we were washing him he was sitting, then standing (for the first time in 4 days), playing with things in the room, showing interest.  The change was remarkable.

Alla, the more optimistic one, may choose to see this as an early improvement step.  I am inclined to be much more careful.  Even if the two hour respite attributable to the right drug combination - I will take it.  It sure was good to see Zevi playing.

Day +9

Another day is mostly over.  The lab numbers remain unchanged.  Platelets and red blood cells have been added via transfusion.  Most of the day Zevi has been sleeping, in part due to Benadryl.  No loss here - Zevi continues to miss exactly nothing exciting in his life.

Diarrhea is much better, but the skin in the related area is not much different - can't heal without white blood cells.  As for now, we continue to apply cream liberally in order to fight a rear guard action, as it where.  Nausea has not been too bad due to proactive spitting - the mucus from the gut does have to go somewhere.

At present Zevi is bathed and has taken the night time oral medicine.  One more round of washing the mouth remains.  Zevi is rather awake now and watching "Fixiki" - which is no small mercy, as I was starting to go measurably mad from multiple hours of the same cartoons of "Peppa the Pig" (in Russian) over and over and over.  Hopefully, we will be done with the final battle and going to bed in not too distant future.

In the mean time Grandma Lina has arrived from Boston.  While she is not yet allowed to visit Zev, she does get to spend time with Benjamin.

Benjamin enjoying a waterfront stroll with Boston grandparents. 8/23/14

Day +8

This was a pretty tough day.   Zevi had some pain and nausea, though diarrhea seems to be getting better.  Over all he is rather tired and has not been out of bed.  The kidney and liver counts are holding steady, while platelet and red blood cell counts look like infusions will be needed tomorrow, which is all par for the course.

Alla is off home for a break and I am starting my shift.  Hope to be going to sleep in not too long.

Day +7

Today the suck continued, largely unchanged.  There was a little more nausea, a little less pain (due to higher rate of morphine drip).  Zevi continues to sleep a lot, which is fine - he is not exactly missing anything exciting.  At some point during the day he was awake and active and aware for a wonderful hour and played with Grandma Rita.  Alla is managing as well.

Today, I was reminded by my dad, is our wedding anniversary.  Both Alla and I would have missed it otherwise.  Once reminded, I stopped by the hospital with sushi, balloons, a card, and a contraband box of wine, since the nurses are pretty adamant about not sharing the morphine.  In case any of hospital supervisors are reading this - the nursing staff had no idea I snuck in booz.  Alla and I shared a surreal meal in a semi-dark room, with wine out of paper cups, to the sound beeping machinery and periodic interruptions to administer morphine.  To my surprise, the meal was far more festive and hopeful than it had any right to be.

Zeva feeling well, 8/21/14

Benya tests the newly constructed deck benches, same day.

Day +6

Today the suck continued in full force.  More specifically: the blood counts are low, yet kidney and liver indicators are fine.  We are giving ground in the battle for skin care, very slowly.  At the same time the diarrhea is not getting worse, at least; perhaps might be getting a little better.  The first few sores in the  mouth are now visible (just white spots), but do not seem to be bothering Zevi yet.  The gut continues to hurt.  The hair is falling out in earnest now.  Zevi is very hoarse and almost exclusively whispers.

All of the above is being handled with medicine.  Zevi is on many "anti-" drugs: -viral, -fungal, -biotic (I believe we are at four antibiotics at this point), anti-GVHD, anti-pain.  A couple "pro-": pro-liver and pro-kidney, I think.

For all this, when not in acute pain Zevi shows interest in things, sometimes sits up, smiles.  We continue the regimen of mouth washing.

What does help us all is the constant stream of cards that we receive.  I cannot tell you enough how much the support means to us, especially Alla who spends her days by Zevi's side.  Zevi, for his parts, enjoys ripping the envelopes and listening to us read the cards to him.

Many cards and three drawings on the wall

Two more drawing, five planets, and some(!) of the toys facing Zevi

Day +5

Today brought some things that were good, and some less so.  The white blood cell counts continue to be at zero.  The red blood cell were low, and were added - and gave Zevi an energy boost.  Diarrhea has abated a bit, but the irritated skin continues to bother Zevi.  Zevi continues to put on a little weight and round out.  Cleansing of the mouth continues as well.  Today also brought a constant stomach ache and a new hoarseness, almost to the point on Zevi loosing his voice.  The docs confirm that things are as expected.  It also looks like, in spite of valiant efforts, mouth sores are on the way in.  

All of the above is being managed with a now constant, very slow drip of pain meds.  But it is not all gloom, however.  With the infusion of red blood cells Zevi got a boost of energy.  Combined with a visit from a Russian speaking volunteer Edward, Zevi not only got out of bed, but spent full 90 minutes in the play room.  Sure, he spent them mostly with mom, but he was animated, seating up, exercising his lungs.

In the evening Grandpa Misha and I Skyped with mom and Zevi and got to watch Zevi rinse his mouth and brush his teeth like a pro.  Another day is over.  

Benjamin, in the mean time, is making strides of his own.  At bath time he volunteered to pee "like a big boy" - which he proceeded to do standing up.  He then flushed the toilet and lowered the seat and the cover.  

Day +4

Today doctors officially confirmed the counts have hit zero.  The day did not bring any major changes, just somewhat more pain that was managed.  The weekly dressing change went well.  The wait continues.  I spoke with Alla briefly.  She sounded tired, grimly determined.

Thank you everyone for the cards, gifts, and wishes.

Day +3

Another day is over.  It was, once again, dominated by intermittent diarrhea and subsequent butt care.  Pain medication use was limited.  Mercifully, this was the extent of it.  No mouth sores yet.  Zev's energy level was up.  He set up, did leg presses again dad's shoulder and some leg raises.  He cheerfully Skyped with Grandma Lina and his buddy Mark Espinosa.

On the lab front: the infection-fighting cell numbers have, pretty much, hit zero, as anticipated.  Antibiotics have been added to the daily drug intake.  According to various folks who have gone through this, we are just now entering the worst phase.  The length of the phase of suck varies, as does the severity.  Some folks described days, some had several weeks.  We hope for the best and continue to take it one day at a time.

 Once again, it was over all, not a bad day.

On the home front Benya had a good couple of days with mom around and some time spent in the park.  Here are a couple of pictures of him.

Bathing with an awesome gift from Liwen  8/17/14

Clean Benya!  8/17/14

Day +2

The day has not been bad, but not exactly pleasant either.  Zevi is weak from anemia, diarrhea, and general effects of the chemo.  The aforementioned diarrhea required hourly diaper changes during the night.  Things abated temporarily during the day, but by evening we were back to a diaper change every 1-2 hrs.  The effect on the skin has been as can be expected.

By mom's arrival in the evening we were both tired and tempers were short all around.  Regardless, bathing was achieved, mouth washed and medicine will be taken shortly.

Over all, this is as expected.  Right now Zeva has perked up a little and even set us a couple of times voluntarily.  He also blew bubbles with mom wich is great for his lungs.  I will be trying to do some of that with Zevi tomorrow.

Another day is almost done.

Day +2, morning

The night was OK, though hectic.  For the first couple of hours a kink in one of the tubes kept causing alarms (nothing actually serious).  Around 1 AM our awesome nurse checked over all the lines and fixed the problem.  The festivities were then dominated by the irritated stomach lining, i.e. a diaper change pretty much hourly.  This, and subsequent bottom care, will be the focus of the next few days.  The neutrophils (primary bacteria-fighting cells) are low, but not low enough yet to require transfusion.  Likely tomorrow.  Today, besides the usual meds, Zevi is receiving platelets.

Other than that everything is going very well.  The cell dose Zevi received has been large.  As docs put is, "for where he is in the transplant process, he is feeling very well."  We will gratefully take any day when Zevi feels OK, poop or no poop.

"Hi, papa!" 8/15/14

Two nights ago I was putting Benjamin to bed and reading a book of his choice.  In an interesting milestone Benjamin choice "catausi and mousy" - translation from English, I believe.  It is a rather trivial story of cat wants to trick and eat mouse, mouse says "I see your mean eyes and mean mean teeth" and runs away.  The boys used to love it.  This time, Benjamin did not find the book amusing at all - this time he understood the words.  Ah, innocence lost.

Day 0

The transplant is done.  Zevi is sleeping, feeling fine.  Now we wait.

At last check 14:20 Pacific all the cells are in and Zevi is doing fine, asleep

Day -1

Well, we have made it to Transplant Day.  Remarkably, today Zevi felt very well also.  In spite of some nausea, he Alla were up to terraforming.  You heard me, they made some planets.

Zev and planets.  8/13/14

Offering them up.

Later, bathed and rested, Zevi even enjoyed a little snack.

Yes, he actually ate some of that

The plan for tomorrow: infusion of donor cells assisted by some meds for fever and allergic reaction plus taking vitals a lot.  G-D willing is shall go well.

Day -2, chemo regimen complete

Another day is over and it was a good one.  While Zevi's blood counts continue to go down, they are still high enough to make him feel well, if tired.  When I saw Zevi in the evening his spirits were up.  We got him bathed (which was not without some drama), mouth rinsed, meds taken.  In mean time Zevi made a new friend, a Russian-speaking volunteer, Edward.  Here they are creating art together.

with Edward, 8/12/14

Tomorrow is "rest day" - which means no chemo, but the start of immune-suppressant drug.

From now on - please do check with us before visiting Zevi.  I am pretty sure the isolation protocols will be changing now.

For the moment, however - another good day and we take it as a blessing.  Thank you to those who have sent cards and gifts.  The support means more than I can express.  As promised, here is the address at Doernbecher:

Zev Kaplan, room 19
DCH 10S
3181 Sam Jackson Pard Rd
Portland, OR 97239

Day -3

Today was a surprisingly good day.  First of all, the night went well and during the day Zevi felt better.  Also, his dressing on the central line got changed.  Due to some anti-anxiety meds the procedure went rather smoothly, I heard.  By the time I got to the hospital Zevi was changed, bathed, peeing at an appropriate rate and in good spirits.  The labs are still looking good, though the counts are starting to go down.  For the first time in six months for sure, likely a year, Zevi's white blood cell count is not elevated.

While we know that this state of affairs cannot continue, this was a great day and we will take it.  Thank G-D.

Also, someone gave Zev a guitar.

8/11/14

and another

The musical talent sure is not from mom or dad.  Grandma Lina and Grandpa Misha, perhaps.

I also have no idea who got him not one but three toy guns.

Barrel is pointed in the safe direction, but no trigger discipline at all.  Need to work on that.

I truly never intended for the boys to have toy guns, since I fully plan on teaching them to use the real thing.  As long as Zevi has a dart gun, I was teaching him to add using ammo.  Seems to work and he enjoys it.  That being said, the guns have terrible sites and the trigger pull is atrocious.  If my son is to have a toy gun, it has to be a good one.  Next, I shall ask a question even the most Southern of Republicans (or is it most Republican of Southerners?) rarely ask: "what is the best gun for a three year old?"  I suspect a trip to a toy store in my future.

Benjamin is doing well also.  He is turning into a kid one can deal with most of the time.  He much prefers books in Russian, but cheerfully recites chunks of the alphabet in English upon request.  More importantly, he tolerates mom and brother being away and me coming home, showering, and leaving again, to come back at bed time.  I am sure this is not easy on him and the grandparents are doing an amazing job with Benya.  I am very grateful for Benya being as mature and easygoing as he has been.

Just as I type Benya woke for the second time with what seems to be a bad dream - and went right back to sleep once reassured.  Clearly, we all pay a price, including Benjamin.

Day -3, morning

Days -6 and -5 were pretty easy - no side effects to speak of.  Day -4 brought a new drug and some nausea and, understandably, Zevi feel weaker.  This one tends to affect the bladder, so Zevi is receiving lots of IV fluids and we deliver lots of replacement pants.

Not much else to report at this time.  Even with nausea, this is all far from bad.  We continue to take it one hour at a time and brace for changes.

At this point Alla is back at the hospital as of last night.  She had somewhat of a rough night with Zevi throwing up twice.  I think they are asleep presently.

Day -7

The days was mostly good, and soured a little in the evening.  So far Zevi has been tolerating the treatment really well - the first 24 hrs of it.  To the surprise of some doctors even, he was allowed to participate at the rooftop music party.  One of the hospital volunteers played the ukulele.  Zevi enjoyed many songs and even danced.  At some point in the day the dressing on his central line was changed, and that appears to have gone well also, though it did leave Zevi really skittish about having anything near his chest touched.

By the time Benjamin, Grandpa Misha, and I showed up (around 7:20 pm) Zev was more subdued.  Benjamin, for his part, was getting hungrier and crankier by the minute.  After some decent playing and watching of cartoon together - followed by a messy effort to feed Zev while keeping Benjamin from gobbling up all the food - Benjamin was sent home with aunt Vika and grandpa.  I stayed around for the nightly bath.  Zevi got stressed, utterly refused to get into the bath, and a debate followed.  Eventually Zev threw up whatever his mom did manage to get him to eat.  At this point Zevi was summarily and briefly washed.  Eventually some semblance of calm returned.  Zevi was dressed, rinsed out his mouth, was dressed again (moth was not the only thing that got rinsed), and settled down for a few cartoons before bed.  At that point I headed out to prepare for my intended weekend stint there.  The duration of said stint will be defined by Zevi's willingness to tolerate me instead of mom and, to some degree, by my ability to tolerate the situation.

Day -8

Today was another good day.  Zevi has been playing, had energy, showed his famous smile.  Ate little, but drank some juice and fortified milk.  He is not yet on IV feeding, though nutritionist said we may start adding nutrition via IV over night.

At this time Zevi has received one dose of Busulfan.  Even that was not without some excitement.  The exact dose was calculated based on the "test-dose" administered early Tuesday and several subsequent blood measurements.  The samples were sent to a specialized lab in Seattle and, based on the analysis, computations were made.  The dose they came up with is a fair bit higher than the test dose, which spooked Alla.  She ended up holding nurses at bay for over an hour while we received confirmation of the dosage from the physician.  In the mean time Alla got her hands on the analysis report from Seattle and forwarded it to me.  Needless to say, this was discussed with very knowledgeable folks (thank you, Ken!) who, pretty much, told us to shut up and let the professionals work.  The shutting up part was hard for your truly, as well as Grandpa Misha - two physicists saw a log-normal graph and finally had something to sink their teeth into.  Pharmacokinetics, you say? Close enough!  Surely, we can improve on the process.

In the end, the treatment is proceeding.  I suspect, so will my digging, much to the chagrin of some docs at OHSU as well as Boston Children's and possibly some people in Seattle - but such is life.  We are diggers and question askers.

I came by fairly late in the day and again Alla and I gave Zevi a bath.  It was a slow start.  In particular, the process of applying the "aquaguard" tape was not hit (removal even less so, though neither actually hurt).  Once we got going, however, Zevi had fun.  Back in the room, washed, dry, clothed, he was comfortable among the toys with mom, blanket, snake, iPad, and dad (not sure on the order of iPad vs. the snake, but otherwise I got the priority list right).

At this point the room is saturated with decals, stuffed animals, various airplanes, cars, mylar balloons, one train and a Marine helicopter with a Mexican flag on the tail (ya, me neither).  Please, do not send toys.  Suggestions of board games or truly original toy ideas are welcome, of course.  If some of you feel like it - I think Zevi would enjoy receiving cards.  Russian is preferable, but I am pretty sure we can manage to translate for him too.

Naturally, I forgot to ask the nurses for the address.  A mistake that shall be rectified tomorrow.

Finally, a couple of pics.

There is the smile!  Taking a bath with air power on display.  Bandage strictly decorative for the last three days.  8/6/14

Lightning McQuinn pillow, Maya the Snake, blanket, a gorgeous quilt (gift of some hospital folks) and the iPad.  Oh, and the bed has buttons and moves.  Not too shabby.

Day -9

Today, by all accounts, was a good day.  Zev had energy and even ate some ice cream.  He played, received lots of toys, had energy and was in good spirits.

Grandmas Rita and Lena stopped by.  Aunt Shawna came by (also for the second straight day) with a balloon, sushi for Alla and love for all. In the evening Benjamin, Grandpa Misha, and I visited.  Zeva was happy to see us all.  He enjoyed a long bath.  Benjamin chattering and occasionally yelling throughout the process provided normalcy, according to Alla.  It was a good day.

Admission day, 8/4/14.  Recovering from the surgery.

In better spirits.  8/5/14

Boys at play, same day

First day at our new home

Hello everyone,

This is Alla reporting from room 19, 10^th floor of the Dornbecher Oregon Health and Science University Hospital. This is our home for now, for another 5-7 weeks. It’s 9:15 PM and Zevi is sleeping. Today has been a long and somewhat of a difficult day. I say somewhat difficult because I don’t know what is to come.  Zevi is feeling okay now, tired from the sedation but feeling okay and that’s all that matters.  

A little bit about our day…

We had to wake up Zevi early this morning, around 7:30 AM to get to the hospital.  Yesterday, we let the boys go to sleep late because of the special circumstances. At the hospital Zevi had his IV put in, blood drawn, platelets transfused and was cleared for surgery. A “central line” was surgically put inside Zevi’s chest, for the purposes of giving all sorts of medications and blood draws. When Zevi awoke form the surgery our poor little man was sleepy and crying. “No more of this” he told me in Russian. I don’t think he noticed the line at first, but complained his neck was hurting.  The line is underneath the skin in the neck and goes down to a vein in the chest. When he looked down and saw the gauze and the tubes he asked “what is this for?”

 I think we finally got to the room around 4 PM; Zevi watched some cartoons but still was half asleep. I tried, but he wouldn’t eat anything. Just had apple juice and some cholocalte milk. Hopefully tomorrow he will eat something.

The one thing that gave him a distraction today was watching Dad and Grandpa put up a solar system decal in the room. Zevi loves everything related to Astronomy! He knows the solar system planets by heart. While the solar system was going up Zevi casually inquired about Jupiter’s Great Red Spot (a raging storm the size of three Earths). Then he argued with Dad about the orbit of Pluto. You see, on the decal, Pluto almost looks outside of the main solar system, now relegated to a “planetoid” status. Zevi didn’t like that too much and wanted Pluto’s status as a full planet restored.

Today it begins. The journey to the cure; to a life without leukemia. I believe in Zevin’ka, he is going to make it and thrive! BELIEVE IT!

At 4 AM, Zevi will be given first dose of his pre-bone marrow transplant medication. I pray his body will take it well.

Singing out for now…