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SIMON SAYS (December 2001/January2002)

January 27, 2002 "Roar like a lion" (a story in two parts)

PART I: At the Chinese restaurant, Simon said:

"I can roar like a lion, see? RRRRRAAARRRH!!!"
Out came a few stray noodles (Simon's favorite is Pan Fried Noodles with Shrimp--called "Crunchy Noodles").

"Oops. I guess I better swallow first!"
[After swallowing, Simon roared again. Anyone familiar with the yoga Lion's Pose will have a picture of his roar.]

PART II: Around midnight, after Simon woke up for a coughing spell, Mary was easing him back to sleep by naming all the wonderful people (like the people reading this Web site!) who are thinking of him. Simon commented that he was too sleepy to remember (pronounced "bemember") all these names, and he said:

"Sleep is not for thinking; it's only for resting. ...and it makes you roar more louder!"

January 25, 2002 "Ready to leave the hospital"

Continuing on an earlier theme and doing just as he was singing:

"When you're happy and you know it, throw a spit-up bucket in the air..."

January 24, 2002 "Wendy's"

Simon ventured out to the playroom at the hospital on Thursday afternoon. After perking up a bit, he suddenly said:

"I want Wendy's!!"

We arranged with Simon's nurse to have something brought up from the hospital Wendy's and got back to the business of playing (Simon was building with Lego, and Mary was coloring). Simon, who is learning to be nutrition conscious and often comments on the merits of various foods (like milk, which is good for his bones), said:

"Mommy, ham is good for me, right?"
Mary: Hmmm. Yes, ham is good because it has protein (not mentioning all the salt and nitrates...).

A little later, Simon's nurse came in to take his order. A fun meal with a hamburger, fries and fruit punch. She asked if he'd like a pickle, and he declined, saying there's already a pickle on the hamburger. She asked if he'd like cheese on his burger. He said (politely and earnestly):

"No, just ham."

January 8 (or so), 2002

After cycle #1 of chemo, Simon had severe stomach pain, which we learned to control somewhat with medications. While hospitalized for fever and infection control, he went down to the playroom to see Theresa (one of the fun Child Life specialists). They played a Winne the Pooh computer game and had a dialogue that went something like this:

Theresa: Simon, you're really good at this. I think you need to try a harder one!
Simon: "No, because my tummy hurts, and I would get frustrated!"

January 22, 2002

After finally getting started on chemo drugs at 2:00 am, Simon had a pretty crummy time on Tuesday. He had a lot of nausea and spent the afternoon in a benedril (sp?) haze, trying to get over the nausea, but pretty out of it from the medication. Between bouts of sleep, he awoke, crying and/or needing to urinate. Is anyone surprised that this is what he said?

"I want to go HOME!!!"

January 17, 2002

Simon punctuated Mary's "Simon and Miriam" bedtime story with original songs about things like chocolate cake. When I complimented him on the new songs and asked him if he had written them himself he said,
"Yes, I wrote them in my heart. I write lots of songs inside my heart."

The next "Simon and Miriam" story, full of repetition, was intended to be more sleep-inducing than the first, and it included "driving, driving, driving, driving...for a very long time." I thought I might have them nodding off when Simon chirped up with:
"I know where they are going so long in the car... I think it's because they have suitcases in the trunk. I think they're going to Gran and Grandad's house..."

I had to take us all the way to Simon and Miriam's cousins' house in Indianapolis before I finally got Miriam to nod off...

January 13, 2002

"Daddy, do you know what's good about my hair falling out...?
...For it doesn't hang down in my face!"

January 11, 2002

Mary: "How does your tummy feel?"
Simon: "Good."
Mary: "How do your bones feel?"
Simon: "Strong."
Mary: "That's great! Can you feel if the medicines are working inside you to make the confused cells stop being confused?"
Simon: "Yes, they are."
Mary: "Can you really feel it?"
Simon: "Uh-huh"

January 4, 2002

"Mommy, the medicine is there to take away the knives from the balls* inside me, the knives that are cutting my bones."

(After waking in the night, feeling discomfort in his legs and abdomen. *Balls: a term used by the nurse to describe Simon's tumor cells that need to be shrunk by the chemotherapy medicines.)

Simon Vodosek, Untitled, January 7, 2001

January 2, 2002

"Mommy, what do you want to be when you grow up, a doctor or a nurse?"
(After receiving his first subcutaneous injection of Neupogen, an agent that helps restore white blood cells after chemotherapy.)

[By the way, Simon plans to be a doctor, and plans for Miriam to be the nurse!]

December 30, 2001

Before Simon went to bed in the hospital Mary explained to him that the chemo medicine is hard on his bladder and that the doctors and nurses had a plan to wake him up every 2 hours to get him to pee. He didn't like the idea. When asked about what different plan he has for taking care of this serious need he said:

"When I go to sleep at night, I usually don't make any plans!"

When Mary tucked Simon in in his hospital bed she told him that she was sorry to disturb him. He responded:

"When people say sorry, it means that they won't do it again. Everyone says sorry, so they can't do the bad things anymore."

December 29, 2001

"Mommy, everybody's heart is filled with music!"

"When you're happy and you know it, get a poke!"

Enough people have wondered about this one, that I thought you might like to hear the context! During Simon's chemo, we need to wear gloves when we help him use the toilet because the drugs are pretty toxic in his urine. One time (when Simon was feeling pretty sick of the whole deal), he decided to wear gloves, too, thereby increasing his ability to cooperate with the project. That was when he said,
"I can touch my penis because I'm wearing gloves!"

December 28, 2001

"I'm in charge of the birds-like God is."

"The doctors and nurses are very busy. Do they have time for lunch?"

"Where do the doctors sleep?"

Playing with his hair:

"Mix, mix, mix-now it look different."

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