Life

Thursday, November 29, 2012

When I worked at CJP, I tried for years to secure Sarah Silverman for an event.  I sent her letters and emails.  I called her relatives.  I harassed her agent.  And it never worked.  I couldn't get her to commit to speaking at a fundraising party.  Nope.  She was too busy and too famous (and, let's be honest, we had no budget to pay her) to schlep to Boston. 

But this morning (at 2:45am), I got a pretty ridiculous email with this attached:


So I'll admit it.  I was so excited I couldn't fall back asleep.  (You may remember that I love famous people and Sarah Silverman, is, like, come on, the coolest female comedian out there.  I'd be thrilled if I were even a smidgen as inappropriate as she is.)

As fun as this video message was, I wish it was going to someone else.

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It's now day 4 as an in-patient.  Ari's fever is finally gone but his blood counts are still low.  Though the doctors are fairly certain the fever was not from a bacterial infection, he still must receive IV antibiotics around the clock until his ANC rises.  This ensures that his body will be able to fight off any little bug once he is discharged. 

Meanwhile, Ari is having a blast in his old stomping ground.  He is chasing down the robot, playing with the toys, reading tons of books, doing art projects, and socializing with other kids.  (And eating ice cream and oreos for breakfast, lunch and dinner.)  To him, this place is like summer camp.  I really hope the session ends soon!

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Day 1 again

Tuesday, November 27, 2012

Because things were just starting to feel normal...(that may be a stretch, manageable is more appropriate a term), and because Alison gets so much attention (that is definitely a stretch), Ari decided to go on a little vacation. He didn't choose a warm and sunny destination like Florida or Vegas. He opted for a little retreat at the kids only motel in Boston.

You guessed it. We are back on 6 north.

Ari got the seasons a bit mixed up. Instead of spring fever, he got fall fever. Literally. And with 102 deg body temp in combination with low blood counts, he's checked in to the 6th floor for at least a few days (could be a week. Or 2. ) until his counts rise.

Being back blows. 

Think good ANC thoughts!!

(blogging from the iPhone, excuse all typos)


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5 days of steroids...

Monday, November 19, 2012

On the first day of steroids my Ari said to me,
"1 avocado sushi."

On the second day of steroids my Ari demanded of me,
"Two bowls of white rice and 1 avocado sushi."

On the third day of steroids my Ari shouted at me,
"Three plates of pasta, two bowls of white rice, and 1 avocado sushi."

On the fourth day of steroids my Ari violently screamed at me,
"Four scoops of PF Changs black bean chicken, three plates of pasta, two bowls of white rice, and 1 avocado sushi."

And on the fifth and final (hallelujah) day of steroids my no-longer-sweet Ari cried and screamed and yelled at and harassed me,
"Five salty pickles, four scoops of black bean chicken, three plates of pasta, two bowls of white rice, and 1 avocado sushi. (And chips.  Hummus.  Rice.  French fries.  Daddy's cheese.  More avocado sushi.  Now!  Mommmmmmmy!!  And milk!  Move Mommy.  No sit here.  Fill up water cup.  Go. Hungry.  Fooood!!!"
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No joke.  Ari has consumed at least 15 avocado sushi rolls and 5 pounds of white rice over the last 5 days.  He eats 30 times a day and 3 times throughout the night.  And in between eating, he is a mean, cranky, agitated, tired, indecisive mess. 

Steroids suck.

Only 1 1/2 more years of them.

Yup.  Our new outpatient routine (which we naively believed would be a piece of cake) consists of  a boatload of chemo and 5 days of steroids every 3-4 weeks.  The chemo is no problemo.  The steroids?  Torture.  But, if it keeps the cancer cells from returning, it's worth it.  (But holy cow, it doesn't make these 5 days any easier.)


The good thing about these 5 days of misery?  Ari is undoubtedly gaining weight.  I'm excited for his weekly weigh-in and hope he continues to eat (just not this much) after today.  I miss his cheeks (both sets).

Speaking of cheeks, look at this little girl...


Sorry I haven't written in so long; I simply have no time! 

Oh, gotta go... I'm being summonded. "Rice, rice, rice, rice, rice, rice, mommmy riiiiiiice."

I'm losing my mind.

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