Day +21. Engraftment

Good news today.  With ANC > 500 for three days straight we officially have engraftment.  More details later.

Day +20

Today progress continued.  WBC = 4.77, ANC = 629.  Platelets are up as well, from 29 to 36.  Zevi felt better.  According to my dad, he would play, get tired, sit down, then play again.

While the stomach still bothers him, his voice is returning some, as well as his desire to talk.  Tomorrow night I go in for a 72 hour stretch.  I look forward to seeing Zevi in better spirits.

Day +19

Today was another good day.  WBC = 3.34 and ANC = 585, above the 500 mark.  As importantly, the platelets have gone up instead of down, meaning Zevi has made more on his own than he has consumed.

Over all energy level also continues to improve.  Zevi was in the playroom twice today.  During the Skype sessions he was playful and mischievous and has found his (loud) voice for something other than expressing extreme displeasure.  He still prefers to whisper mostly, but now he can yell just because it gets a rise out of mom.

With news being good the spirits are lifted as well.  We continue to enjoy each day's improvements, one day at a time.

Day +18

This was another day of progress.  To quote a famous NPR program, "first, let's do the numbers".  WBC = 1.57, ANC = 420.  Weight of 14.7 kg, all other numbers well within the normal range.  Also, today Zevi played and, more importantly, ate.  Some apple, two Popsicles, one or two cookies.  Not much in itself, but a big step.  The through-the-tube feeding is going to be reduced to entice Zevi to eat more.

Today I finally have gone in for a visit.  Zevi is rather a different kid from last time I was at OHSU.  He met me with a big Zevi hug, played with mom and Grandma Rita, enjoyed spending time with me as well.  Blackout order on images of Zevi continues, though in my view he does not look half bad.  I hope it gets lifted soon.

Grandma Rita and gets special kudos to supporting Alla during the extra-long stretch at OHSU.

The cards and gifts keep pouring in - thank you!  The toys are really starting to take over the room and some were sent home - we simply do not have the space nor hours in the day to play with everything.  The new cards are going up on the wall shortly and I will post another picture of the 'wall of good wishes'.  One card / poster, however, deserves an image all it's own for the sheer scale and artistic value.  The banner is around six feet across and took Alla and I (and two very nervous nurses looking on) to hang.  The team from GP Strategies took Super Zevi theme to the next level.  Thank you, guys.

Super Zevi takes flight 9/1/14

The awesome banner now flies above the bed, immediately visible upon entering the room.


Benjamin and I took our third trip to OMSI in as many days.  We saw the dinosaurs, we played, we (hopefully) learned.  Then, rather in lieu of a nap, we shared a quite afternoon, Benya on his iPad, me on my Kindle.  I do believe this is my first selfie ever.

Three bears, 9/1/14

Day +17

WBC are up (0.9) yet ANC (neutrophils) are down a little (239). Gut still hurts. Retaining water some, which is to be expected. The rest of the CT scans were declared clear. No huge fevers.

This was a good day.  Alla reports Zevi spending over an hour in the play room, walking around on his own for a chunk of it, playing.  He continues to improve on all fronts.  Another good day is over.

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.