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