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SIMON SAYS January-May 2004

Updated March 5, 2005. Look for the NEW symbol to find the most recently added items.

May 10, 2004 "Anger Management, Simon-style"

Simon: "Sometimes I like to be angry."
Mary: "Why do you like being angry?"
Simon: "It sort of feels weird and nice in my body."

May 10, 2004 "Justification for Being 'NPO'"

Simon was curious about needing to keep from eating and drinking (NPO=nulla per ora, or nothing by mouth) before a procedure. He remembered a time that I (Mary) helped him get through a very difficult NPO morning in San Francisco by telling him of the life-threatening dangers of spit-up getting into the lungs during anesthesia.
Simon: "Is it that I can't eat because it might kill me? Like before anesthesia?"

May 8, 2004 "Happiness"

Dancing around after being unhooked from his pain pump, Simon declared:
Simon: "I have a feeling in me. It feels so happy!"

May 5, 2004 "A New Twist on an Old Joke"

Some of you may know this joke. Q: Why didn't the skeleton cross the road? A: Because he didn't have any guts!" Well, Simon knows that one, too. And he gave this variant.
Simon: "Why didn't the skeleton cross the road? .... Because he was already on the other side!"

April 15, 2004 "Lonely in Oakland"

Mary was busily packing up to fly home from California, and Simon was discontentedly watching TV alone.

Simon: "I feel as lonely as a beach with no people on it."


April 12, 2004 "Random Thoughts While Medically Traveling in California"

Simon: "The good thing about a penis is, you don't have to sit down on a cold seat. You can just lift [the lid] and stand up."

[Later that day]

Simon: "Smelling roses makes me calm. And that's the best thing for your body, to make it better."

[Fabulous roses were in bloom at Annette, Steve, and Rowan's house in early April. I guess the cold toilet seat was at their house, too?]


April 7, 2004 "School Contest"

Discussing the upcoming contest at school to design the school T-shirt for next year, on the theme "Imagine That!", Simon remarked:
"Everyone who enters gets a prize. And they give out some first and second prizes, like that. It's not because of winning that makes it fun, it's just fun."
[We are eager to see what he comes up with!]

April 7, 2004 "Hospital Critique"

Hoisting himself with difficulty onto the high examination bed in his clinic room, Simon remarked with disgust:
"Why do they call it "Primary Children's" if the beds are too high?"
We later shared his comment with Dr. Lemons, who chuckled and said he'd never heard that comment before, and he thinks he should pass it on to the hospital administration. Simon would say, "Duh!" By the way, Dr. Lemons is expert at examining Simon (listening to heart and lungs, looking into ears and mouth, palpating head, neck, stomach, legs, etc.) without annoying Simon too much while he plays Nintendo. Kudos to Dr. Lemons (who, by the way, has a nice straight back while he examines Simon on the ergonomically-correct-for-doctors bed).

April 7, 2004 "Mixed Views"

After hearing the CT results today, Mary passed along to Simon the good news that his skull cancer hasn't gotten bigger, so the medicine (CEP-701) must be working and he can keep on taking it. Simon asserted:
"That's not good for me, because I HATE the medicine."

March 11, 2004 "Fixing Simon's Cancer"

Simon was about to embark on the CEP-701 clinical trial. CEP-701 is an oral anti-cancer medicine in phase I study. Simon went to UCSF in San Francisco to enroll in the study.

Mary: "Do you think the doctors are going to be able to fix your cancer?"

Simon: "It matters about the medicine. How strong it is to kill cancer."


March 4, 2004 "Simon's Favorite Foods"

Simon and Mary brainstormed a list of his favorite things to eat.
bunny noodles
eggs with bacon
goat cheese
sourdough bread
rice krispies
tomato sauce with ground beef

March 1, 2004 "The Good Thing About Chemo . . ."

The sheet of paper from a purse-sized notebook containing this quote is in Grann's (Ann Craig's) handwriting.
Simon: "The good thing about chemo is that it destroys cancer and I don't need a haircut."


February 16, 2004 "Miriam's Explanation"

Miriam was playing with Charlotte, the younger sister of Simon's friend Ellen. In the fall of 2002, Simon had received a huge quantity of Playmobil from the Make-a-Wish Foundation. Miriam and Charlotte were playing with it.
Miriam: "Do you know why Simon got lots of Playmobil? 'Cause he lost his hair. And that's why he has a central line."


February 6, 2004 "Self Esteem"

Simon: "Even though I'm small for my age, I sure am fun."


February 6, 2004 "Friends"

Simon: "Friends never stop being friends."


January 30, 2004 "Destiny"

Simon and Mary were watching his new video, Bionicle: The Mask of Light. This animated film about robots that you can build out of special Lego kits has a theme of destiny. Simon expressed his puzzlement over so much emphasis being placed on how long it takes the main character to discover his destiny.
Simon: "Everyone should know their own destiny."
Mary: "But many people don't, and it takes a whole journey to figure it out."
Simon: "I know mine."
Mary: "What is it?"
Simon: "My destiny is to fight my cancer."


January 25, 2004 "Electrical Preparedness"

First thing in the morning during a winter of heavy snow and occasional power outages.
Simon: "Mom, do you know why I want a Riachu or Pikachu or Piachu*? So if we have a black-out, I can ask them to do a thunderbolt or thundershock or electric attack!"
*All three names refer to Pokemon characters from the animated Japanese series, and all three are "electric type" Pokemon.


January 21, 2004 "Snowflakes"

On the way to clinic one afternoon in Salt Lake City, Simon was full of observations.

Marveling at all the different shapes of snowflakes:
Simon: "I can't believe that there's snow in all the countries on this side of the equator. And that *all* of the snowflakes are different. It's like different countries of snowflakes."

Looking at a puddle of oil reflecting light in the parking lot.
Simon: "When I'm a scientist, I'm going to study about how oil makes a rainbow pattern. [Pause] And I'm going to study people--about why people get cancer. Then I'm going to tell the doctors about it to make it easier for them to know how to kill it."
[It was clear to Simon that his doctors were working very hard to figure out how to stop his cancer.]


January 14, 2004 "Fortune Cookie"

Simon and Mary went out for Chinese food in New York while waiting for results of his tests that week.
Fortune cookie: "Through greater effort and hard work, a precious dream comes true."
[Wouldn't it be nice?]


January 7, 2004 "When I Grow Up . . ."

Simon: "I want to be a scientist, a mathmeticious [sic], a chemist, and a cook!"



Simon has been saying amazing things for a long time, and many more are documented in previous months. Take a look if you haven't been there yet, or go back to see some of your favorites! Please note, we are working to fill up the gaps in the chronology.

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