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.