It’s what you wear from ear to ear.

I’ve been having a hard time journaling, lately.  If you hadn’t noticed.  We have been living each day and simply soaking it up.  By the time I sit down to write, it gets stuck between my solar plexus and my collar bone.  Hmmmmm.  Isn’t that where the heart lives?  Imagine that.  I have this desire to hoard these last few weeks.  As if I’m some greedy hermit who lives next door to you, but never interacts.  I am also suffering from a bad case of “What if’s”.  None of them have to to with his treatment, either.  They are all germ/virus/bacteria/fungal related.  What if he touches the wrong thing and some creepy microbe gets in there and fouls everything up.  It doesn’t prevent us from going out, it just means that no one that doesn’t need to, doesn’t come within three feet of us.  Which brings me to my safety zone.  Back HomeHome I had about a 5 mile safety radius.  I’m slowly establishing one, here.  How far can I travel, which route and during what time?  ‘Cause I KNOW I need to get out, once in a while.  I KNOW that when we are out-patient, it would do Gregory good to go for a pleasure ride.  I’m so grateful to have a car, I’m so grateful to be somewhat familiar with my surroundings. 

I cancelled my Netflix subscription.  I just cannot watch any new movies.  I cannot watch any new episodes of my favorite premium channel shows.  I cannot get hooked on a new series.  I find myself craving all my comfort movies and shows.  Stuff that I know like the back of my hand that bring me happines, expected emotions and familiarity.  Those beloved characters that live in your heart.  You may not think you feel this way about movies or TV shows, but stop and think for a  minute.  There is at least one movie and one series that you could watch over and over.  I exposed Gregory to Annie, tonight.  I LOVE that movie.  The 1982 version, if you please.  How can you go wrong:  Carol Burnette, Bernadette Peters, Ann Reinking, Albert Finney……….  Tim Curry!!!!  I wanted to be Grace. 

Today was yet another BEAUTIFUL day.  We had counts and an exam, nutuition & research, too.  His hematocrit is holding at 27, his platelets are at 22, his white count went up to 25.  There is also an elevated number of blasts.  Which means that we go back on an oral chemo.  Just to keep it from raging, before we are admitted.  He is on 300mg/day of Hydroxyurea.  This is something I’ve never heard of and I don’t know anything about it.  He will only be on it for five days, though.  Due to the level of his platelets, we are having another platelet count tomorrow, with possible platelets and if we don’t need platelets, then we will be back Friday for another platelet count.  Why all this?  They are trying to get his platelets done before the weekend and before we are admitted MONDAY.  Yep.  FOUR days.  We will go in at 4:00 on Monday June 1, 2009.  He needs to be “Loaded” with Dilantin.  He will receive one dose at 5:00, one at 8:00 and one at 11:00.  The chemo he will be receiving can bring on seizures.  The Dilantin is to prevent seizures from happening.  Then his six days of Chemo will begin Tuesday.  Amazingly enough the terror that I had been experiencing has suddenly vanished.  Don’t know where, yet I’m sure another unfortunate family has inheritted it.  There have been a ton of new arrivals here at Ron Don.  In terror’s place I now find a weird feeling of Excitement.  THE DAY IS ALMOST HERE!  We are anihilitating this freakin’ beast, evicting it and new tenants are moving in.  We finally get to do something. 

The new chemo drug was not available through the pharmacy at Clinic so we took it to Seattle Children’s.  Which is SOOOOOO close to home.  There was quite a wait, so we dropped it off and went exploring.  Like I said before, the weather has been so perfect.  Crisp sunshine, lush, green.  Temps around high 60’s to low 70’s.  Perfection.  We took off on northbound Sandpoint Way and just drove.  It turns into 125th and goes through Lake City and hooks up with Hyw 99, AKA Aurora.  We then took Aurora north.  The trafic was perfect and we just kept scooting along.  I had to wake Gregory up, before he was ready this morning, so he napped the entire way.  I drove all the way to Lynnwood.  Which really isn’t that far.  On the way back, guess what I found?   ARBY’S!!!  Or Barbie’s as Gregory calls it.  They have cooked, sliced ham.  Gregory was still asking for ham, today.  So he had a regular ham Arby’s and some fries.  He gobbled up a bunch of fries, but three guesses how he ate the sandwich and the first two don’t count.  He. Took. One. Bite.  Ugh!  *shrug*  There ain’t nothin’ I can do about it.  He will eat when he is ready.  Today his weight was at 12.8 kilos.  .5 kilos away from our goal.  Or one pound.  Thankfully I am more than prepared to see him in an nG tube.  I said prepared.  I didn’t say I would handle it without a hitch.  We will see when it comes. 

I cannot wait to get into the BMT apartment.  Having to use a kitchen on another floor, having to story our food on another floor, having to do laundry two floors down.  I realize how lucky I am to have all these amenities at home.  I know it could be worse.  Yet………… it could still be better and it will be.  Having to be so anal about his food prep is trying when you are around people who don’t use the same precautions.  Having to explain constantly why he cannot have any of the salad from dinner, that’s been out for several hours.   Or the pancakes that God knows how many people have breathed on.  Which is no biggie for you and me, remember.  Totally.  Our bodies can fight that stuff off without even breaking a sweat.  I read in our arrival conference notes that at 100 days post transplant, Gregory will only have about 50% of his immune system.  With the balance getting caught up by the end of 12 months post transplant.  Once again, Crazy.

I managed to get Gregory in Pajama’s tonight!  I’m hoping that this is a change.  Except I have a feeling that we will be back to square one as soon as we are inpatient, again.  Just goin’ with the flow. 

Alright, that super cute little body is just calling me to cuddle it.  I need to go snuggle up and read myself to dreamland  er, closed eyes time.  ’til later, gotta jet.

P.S.  I will be loading some pix to flickr of Gregory’s healing chest, post the changing of his central line.  It’s pretty rough.  Just a heads up, incase you go looking for grins and giggle, which are there, but so is that.  They go together, these days. 


About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
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