Day 44

Thursday, July 19, 2012

When Matt and I took our first trip to Las Vegas, we rented a convertible to drive to Lake Mead.  Matt liberally applied sunscreen, we put the top down, and began the 45 minute drive.  After approximately 7 1/2 minutes, Matt stopped the car, had a mild freak out, and exclaimed, "I'm getting a sunburn!" and quickly put the top up for the rest of the drive.  I thought he was crazy.  And exaggerating.  But, in fact, he did get a sunburn.  As did I.  Yup, we are both burners not tanners - a match made in SPF4000 heaven.

Ari did not get the "skip a generation" skin tone gene.  He's just as pasty white as the two of us.  And, he tried to pull a fast one over on us two days ago.  While we thought he was taking a nap in the hospital room, and as we were busily packing up his room to go home, he snuck off to hit the beach and get his first summer sunburn.  Like any good sunburn, it took a few hours for the crimson to appear, but by midnight Tuesday, he was one hot tamale (scalp to toe...did he go skinny dipping?!).  And, that skin of his stayed smokin' hot and bright red all day long.  It even itched so badly I had to cut his fingernails at 1am (which broke hospital rule #1...but a mom's gotta do what a mom's gotta do!) to prevent him from hurting himself.  We tried prescription cream, benadryl, and even a mild steroid, but he was still as crisp as a piece of bacon. 

Obviously, this was Ari's way of telling us he wasn't ready to go home.  So we let him come back.  Now it's 36 hours later and the redness is getting significantly better and fever finally down.  But too bad for him, the burn is not turning to tan. 

I hope the little guy doesn't get skin cancer from this.  Oy.  It's not funny.  I know.
Daily update:

First, I know my blog timing has been off and I will try to get back to my 10pm postings.  But no guarantees!  If I don't post at night, please don't worry.  We just haven't yet returned to our normal routine.  

So we're back in our old room but we now have a roommate.  It's our second roommate in the last 36 hours.  The first one was 16 and I heard him telling a friend, "I have a roommate.  He's 2.  Yeah, I know.  Diapers.  Could my life get any worse?" and I had to chuckle.  That kid went home yesterday at 7pm and by 8pm, we had a new little boy who I estimate is around 10 or 12.  I can't complain (his dad snores, the tv is loud, and they turn the lights on early in the morning) because we were roommate-free for 37 days and now the floor is totally booked.  Plus, my red hot toddler enjoys the company.  (And as my saint-like husband reminds me often, all of these kids are very sick.)

The rash is getting better and Ari seems more comfortable.  They think the rash is an allergic reaction from one of the anti-biotics he was taking, so they've switched him from two hard-to-pronounce medications to two other even-harder-to-pronounce ones.

The fever (which is what brought us back in the first place) is unexplained.  The good news is nothing grew in the petri dish so it's not a bacterial infection in his blood.  The bad news is they have no way to pinpoint the cause of it.  Maybe it's just a virus, maybe a chemo reaction, or it could be something else.  If the fever had cleared immediately, they would have sent us home again.  But because fevers are red flags in the cancer world, they will keep us here until he is fever free for 48 hours.  The really bad news is that the chemo Ari received last week will cause his counts to drop in the next few days, and with low counts, it will be very tough for Ari's body to fight off any sort of bug.  This may mean he has the fever til his counts recover.  As you may remember, we are scheduled to start phase 2b in 2 weeks, so we may just be stuck here until then... with no week/s off at home. 

So yeah, we're bummed that we packed up our room, our snacks, our clothes, our toys, our books, our air mattress, and 42 days of stuff (this was just 1/2 of it),

but we would much rather be here than home if Ari isn't feeling so hot.  (Well he is feeling hot.  You know what I mean.) 

102 fever, itchy rash, yet still lookin' good...


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