It's a Nomadic Life

First and foremost, let me share the good news that Fionn is continuing to improve every day.  His lesions are clearing up and scabbing over.  The Infectious Disease doc, Dr. Grossman (I mean, is that a perfect name for an ID doc or what?) said that she feels totally comfortable with Fionn going home tomorrow.  The oncologist, Dr. Petersen, just wants to see complete crusting of all the lesions before sending us on our way which we totally support.  Either way, we are hoping for a discharge tomorrow or Sunday.

Other good news is that, after a week of plummeting white blood counts, Fionn's ANC started to rally today.  It was up from 370 yesterday to 600 today.  That is great news because it means that his bone marrow is fighting back.  Take that, Chicken Pox!

Fionn is also just looking and feeling so much more like himself.  His appetite is much better, and he is alert and happy when awake.  He's still sleeping a lot (two naps today!), but that's to be expected since his little body is obviously working hard to fight this nasty virus.

Research shows that powdered donuts help fight viruses.

In other good news, Dex has not sported any lesions yet, so we are hoping that we are in the clear in terms of him having the chicken pox.  He does appear to have a cold and is pretty congested, so we will have to see how he is feeling when it is time for Fionn's discharge.  If Dex is still obviously sick, we might have to find a way to separate the two of them so that Fionn doesn't get nailed with another virus so soon after a hospital discharge.  But that, in the words of Scarlett O'Hara, is something I will worry about tomorrow.  

Despite his cold, Dex has been having a blast traipsing all over Charlottesville.  Here is a peek into Dex's life the last few days.

Frozen yogurt at Arches

Hamming it up on the Downtown Mall

Enjoying some special time with Daddy

Captivated by the live music on the Mall

And, last but not least, Dex loved some special time with Jay and Caroline Miller.  We moved in with the Millers last night after a botched attempt to stay at the Ronald McDonald house.  More on that in a bit.  Anyway, we have all enjoyed being around good friends after such a crazy week.  Thanks so much, Miller Family, for your hospitality!

The Ronald McDonald house.  Okay.  So we heard yesterday morning that they had a room for us.  Although we had our hotel room for 1 more night, we decided to move to the RMH because it was only 2 blocks from the hospital and free.  I was also just curious to experience what I imagined would be a fabulous, warm environment given all the rave reviews I have heard about these houses from other cancer families.

So Conor packed up all of our stuff and went to RMH to check in.  Although the room was super clean and nice, he got a less-than-friendly vibe from the person who greeted him.  Apparently she went on and on about all the rules, making it seem more like a jail than a place for families who are trying to take care of their sick kid.  Conor was very upfront about Fionn's diagnosis of chicken pox at this time.  That was around 3 pm.  He leaves to get an early dinner with Dex.  Okay.  Fast forward to 6 pm.  Conor returns to the RMH to move our stuff into the room.  He is told at this time that we are not allowed to stay there because they are concerned about the possibility that Dex could have chicken pox.  They have other families who are staying there who have an immune-compromised or similarly vulnerable person in the hospital, and they can't risk it.

Don't get me wrong.  I totally get their reasoning.  The last thing we want is to get other vulnerable folks sick.  We just wish the RMH had made this decision before we gave away our room at the hotel.  (Did I mention that it is Garden Week in Charlottesville, and all hotels were booked?)  Or even, say, if they had made this decision when Conor was there 3 hours prior.  As it was, we were left with nowhere to stay at 6 pm at night.  Not cool.  Thankfully, the Millers are the best and immediately said, "Come on over!"  Still, it made for a crazy, stressful night. 

So here is where I get to complain a little bit.  I usually manage to rise above any feelings of bitterness about the terrible chaos that cancer has inflicted on our family.  But this week...this week has been a bit much.  Spring Break?  Really, Cancer?  You couldn't just give us one week of happiness and family togetherness in the mountains?  We needed it so very badly.  Instead, we have had a week in which Conor and I have been ships passing in the night (or, as it were, in the drop-off circle in front of the UVA Medical Center).  And our boys, our sweet boys, have not seen each other since Monday.  It's the pits.  It sucks.  And there is something about it being SPRING BREAK that is just pissing me off.  I want normalcy for my family, and I just can't seem to reach it or hold onto it for very long.  I look at the next 2.5 years of cancer treatment, and I just want to scream.  I'm sure it won't always be like this, but it's hard to imagine that things will calm for us in Maintenance since so far...they've been pretty freaking difficult.

Okay, I'm done.  Thanks for listening.  I will end with the gorgeous sunset we watched from Fionn's hospital room tonight which reminds me that life is still beautiful even when it seems like it's getting dark.  And after all, the bottom line is that Fionn will get to leave this hospital in the next day or two, and I am keenly aware that this is a blessing and not always what happens with sick kids.