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