Day 20

Q&A with Ari on Sunday morning, June 24th. 

Q: Ari, how are you feeling today?
A: I love Ativan.  Where has it been my whole life?  These steroids they give me 3 times a day make me crazy.  One second I'm screaming my head off and telling everyone to move, and the next second I'm laughing like a hyena.  But the Ativan helps make me more Jekyll than Hyde. 

Q: What's the plan for today?
A: I've got nothin' going on.  My parents keep telling me I really need to bathe and walk around but I'm content staying in my crib all day long.  And I gotta be honest, I have them wrapped around my little finger these days so I'm guessing I will win this one.  (And every other one for a while.)

Q: What did you eat for breakfast?
A: The breakfast at 3am?  3 tablespoons of hummus and a cup of chop suey.  Or the 8am meal - spaghetti, penne, lasagna, chop suey, hash browns, and a pretzel rod.  And some milk.  I'm still hungry.  Will someone please bring me my hummus? 

Q: Have you gained any more weight?
A: Yes, 1/2 pound since yesterday.  And if they put that tube back in my nose, I'm just going to take it out.  Take that nutritionist.

Q: What can we get you?
A: I could really use a pedicure.  (So could my mom.  Actually, she needs a brow wax.  She looks like Sasquatch.)

Q: No really, if we want to help, what can we do?
A: Hmmm well here's the thing.  I'm pretty well taken care of right now.  I have all the Italian food I can eat, I have toys I don't want to play with because I'm tired and cranky, and I have a morphine pump whenever I think I'm in pain.  I'll spend the next two years being treated by the Jimmy Fund/Dana Farber and that's where they do all the research to find a cure for the disease.  My doctors are amazing and I'm so lucky to be treated in Boston at this world class cancer institution.  If you want to make a donation, all the kids like myself would greatly appreciate it. 

So many of you have asked me what I want to play with or what I like to eat or what you can bring my parents, and we are so thankful for all of the offers.  As you know, the next 6 months will be very intense, and my parents have promised to buy me a baby sister in September (even though it will be a lot of work), and so I am sure we will need more stuff and more help then. 

Q: How do you look as a short bald man?
A: Actually, I didn't lose all of my hair.  I probably will during the next phase of chemo, but right now, I look a little like Tom Hanks in Philadelphia.  But as a blond. 

Q: Anything we should know if we want to visit?
A: Most of the time, I'm not so into visitors.  I apologize I get fussy when people come in.  But I know my parents like to see their friends so if you come, try to engage me in something fun - like play a musical instrument or do a magic trick or bring me a picture (or a piece of gooey pizza).  I still love attention (in very short doses).  If I'm sleeping or in a funk, try me again in a week. 

Q: What else do you want us to know?
A: Please tell the nurses to stop giving me laxatives. 

Q: How are your counts today?
A: Basically the same as yesterday.  Nothing new to report.  I have a lumbar puncture tomorrow morning and I'm dreading it because I can't eat for 8 hours before the procedure.  Don't these people know I'm always hungry?! 

No more questions, I'm gonna go eat a grilled cheese sandwich and french fries as an appetizer for lunch.