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