Day +131

Haven't written an update for a couple of weeks.  Some important dates have taken place.  For instance, on Sunday was the last day of immune suppression.  That's it - Zevi's new immune system is completely loose and we are down to one daily medicine.

Also, I was gone all of last week and Alla had to handle things here - with (more than) a little help from our friends.  The semi-weekly trip to the clinic went well, with all the numbers performing nicely.  Not everything has gone perfectly last week, however.  During one of the daily line flushings Alla noticed some blood - the line has burst (on the outside).  Long story short, folks at OHSU ER fixed up the line, your basic plumbing job.  The fix, however, held exactly one night and so Friday night Alla and Zevi were right back at OHSU.  Since the ripped line represents an infection risk, the decision was made to push the scheduled removal of central line forward.  So, as of Saturday morning - the line is out.  In the end, I came home to Zevi with no line and just in time to give him the final (we really, really hope!) dose of Tacrolimus.

At his point both Benya and Zeva have runny noses and a bit of a cough.  Zeva did spike a bit of a fever, but it is below the 38 C line and is clearly related to the bug.  We hope it does not go higher and we don't have to head to OHSU.  We will be watching the fever carefully.

What has been working a little better, knock on wood, is sleeping.  Last few nights Alla has not really slept in the boy's room and the slept nicely on Sunday, both day and night, which I really appreciated with Alla already exhausted and me recovering from jet lag.

While this was not an easy week - especially for Alla - we are all home and Zeva is without this line and off immune suppression.  We breathe, hope for another good night's sleep and keep going.

Day +117

Another week has passed.  The weekend is over, new week rolls along.  Another step down in Zevi's Tacralimus dose.  Another Chimerism test showed 100% donor!  Good news.

The whole sleeping thing continues to elude us.  Part of the night I take regular trips over, part of the night Alla spends shuttling between the two rooms, two beds.  Just crazy.

Benya is doing well, his thumb does not bother him much and it looks like the nail is about ready to fall off.  Sorry for that bit of graphic imagery there, but hey, I calls it as I sees it.  I am using the opportunity to introduce the boys to good music.  The official daily thumb bandage changing song is "Yellow Submarine" by The Beatles.  The boys seem to like it and I slip one classic or another into the mix.  We have a fresh crop of books, in both Russian and English.  A bit hit or miss, but mostly hit.  I think we have been making some progress on the iPad from too.  Though we really have to get that sleeping business under control.

Over all - a good week, a few crummy nights, a good day.  We will take it.  I may feel differently at 4:30 AM, but now - we'll take it.

Day +110

Zevi's clinic visit was yet another good one.  All the blood indicators have pretty much stayed flat, with WBC and ANC going down a fraction, while HGB and PLT went up a little, with platelet count topping 200.  We are now officially on one clinic visit every two weeks.  

More, the removal of the central line has been authorized.  This will mean pokes when blood is drawn, yet will also mean the end of weekly changes of the dressing.  On balance, I think one poke beats two dressing changes.  The overriding reason, however, will be the reduced chance of infection.  Our oncologist has authorized the removal, the question will be the availability of an OR and a surgical team, which gets tighter around the holidays.  Also, an orderly removal of a line is a low priority operation, and that is precisely how we would like to remain, thank you very much.

The excitement of the day came from Benya.  Shortly after I got home he managed to pinch his thumb in the bathroom door. He did it well and hard, cracking the thumb nail.  A fair amount of blood, a quick shot of Tylenol.  A short trip to Urgent Care got Benya's finger bandaged up and X-rayed.  At a first glance, no broken bones.  Throughout Benya cried a fair deal, though as much from fear as from pain.  Once Tylenol kicked in, he was a trooper.

Tomorrow we get to go to see our pediatrician to see what they want to do.  Hope for the "leave it alone" approach, though they might very well choose to go the surgical route.  At the moment things are quiet and (just about) everyone is asleep.

Here is the photo evidence of the trip to Urgent Care

Getting ready for an X-ray

Thumbs up!  Benya is looking at the image of his bones on the screen.