SIMON SAYS 2004Updated December 17, 2004. Look for the NEW symbol to find the most recently added items.
August 4-6, 2004 "Simon's Final Plea"
At various times, sometimes with great urgency, Simon requested clearly:
Simon: "Sit me up (right) now!"
We propped him against a back rest in the bed, supporting his elbows on soft blocks. He gradually shifted downward, and then he'd request to be repositioned. We wonder what he had in mind. Did it make him feel better by taking pressure off a sore area? Did he have a task to accomplish that required him to be sitting? Was he preparing for a task in another world? In the night that Simon died, he requested several times to be sat up. He refused to let us lay him down for the night, so we fell asleep next to him as he rested there, propped up in a reclined sitting position. His early morning fidgeting awoke us about an hour before he died, and Markus and I held his hands, re-propped him up on request, told him how much we love him, and listened to his breathing as it slowly came to a stop.
August 5, 2004 "Keep the Drugs Minimal, Please"
Simon never liked to feel his pain medication coming in too strong. He had a clear preference for finding other ways to reduce pain, resorting to additional pain medication only when he really felt he needed it. His steady dilaudid infusion was at a very high dose during his last days. We did our best to ensure that his pain relief was sufficient. On the night before he died, Simon said:
Simon: "Ow, my head."
Given his lack of comment on pain in his head up until then, we felt it must be quite severe. Certainly looking at the distortions in his skull made us imagine the pain to be unbearable. So, we agreed to give him a bolus dose of dilaudid, and Mary pushed the button. In a clear voice, Simon responded:
Simon: "Not on purpose."
Piecing together our prior knowledge of Simon's preferences about medication, we decided he meant that his background dose was sufficient, and he did not want to feel any cloudier from additional medication. We did not need to push the pain button again. Oh, how we hope that Simon truly was not experiencing horrible pain. He certainly kept his demeanor.
August 2, 2004 "Talking Again"
After a seizure/stroke on July 28 left Simon essentially motionless and unable to talk, he began to speak again on this day. I (Mary) was cuddling him in bed. His speech was very difficult to decipher, sounding a lot like a stroke victim recovering thick, labored speech. But I'm pretty sure he said:
Simon: "I love my mama."
Mary: [through tears] "I love my Simon."
July 27, 2004 "5:15 pm"
Mary's notes: Simon is sitting next to me, breathing strangely. He seems to inhale normally, hold it for a moment and then exhale with a brief, heavy pushing it out sound. A few minutes ago, he began to talk in a coherent but more baby-sounding voice. He described needing to clean something.
Simon: "I have to get it clean. I need some help."
Me: "Can I help you?"
Me: "What are you trying to clean?"
Simon: "I'll tell you later."
Simon: "I don't like that. I need to get it away. I don't like the roughness."
Me: "Maybe it's my hair?" [I moved my head away from Simon's head.]
Simon: "It's gone now."
Me: "Maybe you can tell me more about it later."
July 24, 2004 "Delicious"
Simon requested pancakes for breakfast--the real deal, made from scratch by Markus. As Markus carried him from the table after the meal, Simon savored the feeling of eating something that really hit the spot, perfectly.
Simon: "That pancake was sure good. [Pause] Especially the maple syrup is something great to go to the pancakes. The syrup and the butter. It tasted nice and good . . . and rich."
July 23, 2004 "Stubborn"
After steroids used to reduce swelling around tumors, Simon had a gut full of stool but almost no ability to pass it out of his system. His steady use of narcotics for pain compounded the problem, and we resorted to trying suppositories and enemas when oral laxatives were ineffective and too difficult to swallow. On this occasion, Mary and Simon were attempting to make it work the lengthy way: by trying to get Simon to accept the process.
Simon: "I feel stubborn."
Simon: ". . . I feel that I can't help myself."
[I assumed that this confession meant that, in his rebellion against the nastiness and indignity of anally administered substances, Simon recognized that his larger feelings of helplessness against his disease made it impossible for him to cooperate. Later that day, I returned to the topic to see if I'd been mistaken and that Simon may simply have been saying he felt stubborn about the enema.]
Mary: "Did you mean you can't help being stubborn or you can't help your body?"
Simon: "That I can't help my body get better."
Mary: "That must feel frustrating."
Simon: "No, sad."
July 16, 2004 "Important Questions"
After the radiation consult today, we asked Simon before leaving the clinic if he had any questions.
Simon: "Can we go to Toys R Us and pick out a reward?"
Mary and Markus (relieved that Simon is a master at focusing on the big picture): "Absolutely. That was an excellent question!"
[Simon made quick work of picking out some attractive sets of Pokemon cards. So far, the boxes remain unopened, but he requests to have them close by.]
July 16, 2004 "Why Simon's Eyes Hurt"
Discussing the information that the pain in his eyes was coming from pressure from tumors, Mary said:
"So, now we know more of an answer to the question you asked Dr. Lemons about why your eyes hurt. There are tumors growing behind your eyes. We thought it could be the bump on the top of your head pressing down. But that one isn't causing trouble. It's other tumors behind your eyes."
Simon: "I knew that all along... That it was cancer making the problem."
[Our decision, based on the consultation and the CT image that showed multiple tumor sites encroaching on Simon's brain and eyes and jaw, was to forego radiation therapy. The eyes are the only part that cause real distress at this point, and we were guaranteed that Simon's eyes would suffer irritation from radiation. Not worth it.]
July 15, 2004 "Probing"
Sitting on the sofa in the TV room. Simon was sitting again after a nap. I (Mary) asked if he'd like one of his candles burning. He nodded. I told him I could tell him the kinds. I said, "You have your yellow joy candle. And the one inside the holder now is 'courage.'" He interrupted with a nod yes. I said he is my courageous boy, and I got the candle started. It now flickers playfully on the table inside the beautiful onyx holder.
A little later, I sat down with Simon and had a raggedy conversation that went something like this.
Me: "Do you ever think about where you're going?"
Me: "I mean, after you leave here."
Simon: "What are you talking about?"
Me: "I mean, when you die."
Simon shrugged and shook his head. I felt silly for beating about the bush. I tried to probe a little more.
Me: "I have a book* that I think talks in a good way about where people go when they die. Would you like to read it?"
Simon shook his head no.
Me: "Simon, we don't have to talk about it now, but I want you to know that I want to talk with you to learn what you are thinking and feeling. If you want to. Are you still feeling scared? A couple of weeks ago you told me you were scared."
Simon nodded his head yes.
Me: "Do you know what you are scared about? You might not want to talk now, but Mommy and Daddy want you to have everything you need to do what you are doing. We want to help you feel OK."
Simon's responses had been minimalist up to that point, and he receded further into not communicating. I guess there's no reason why he'd crave books about dying, and every reason in the world for him to enjoy the distraction of Magic Treehouse and Captain Underpants.
*The Next Place, by Warren Hanson
July 1, 2004 "Some Thoughts from Friends at Simon's Celebration of Life Party"
Simon's classmate, Michelle, was concerned about the protruding tumor on Simon's forehead.
Michelle: "What is that on Simon's head?"
Mary: "It's a tumor."
Michelle: "Is Simon going to be OK?"
Mary: [gently] "No."
[This little conversation was brief and to the point. Michelle then walked away to ponder this news.]
Please see the Donors to Simon's Memorial Fund page for a recounting of Mary's conversation with Tobias, another classmate of Simon and Michelle.
June 25, 2004 "Afraid to be Peaceful"
In an attempt to help Simon's body stay better hydrated, since he was drinking and eating less while also experiencing an electrolyte imbalance, we accepted doctor-ordered overnight hydration. We hooked Simon up to the pump, delivering the fluids at 100 ml per hour. Almost immediately, Simon had an anxiety attack and felt unable to breathe. At his insistence, we took the fluids off his line. After he was calm again and settling in our bed to sleep for the night, Mary had an intense heart-to-heart with Simon. He confessed that he was afraid the fluids might make him die in his sleep.
Mary: "I'm sorry that you were feeling afraid that the fluids might make you die in your sleep. [Pause] From everything I've read and heard, I believe that when death comes, it is very peaceful. And you don't need to be afraid of it."
[Pause] Simon: "I'm feeling very peaceful right now, and that afraids me all over again."
Mary: "Oh, Simon, I don't want you to feel afraid about being peaceful. It's OK. It's good to be peaceful."
June 22, 2004 "Perfect"
At bedtime, Simon was worn out and complaining about how I (Mary) was adjusting the blanket. His complaining can get very testy, and he is often copious in his explanations of just how badly we might be doing the task at hand. Even though we know his fussiness is part of how sick he is, it's still hard to swallow sometimes as caregivers.
Mary: "You know, Simon, your mom and dad are often not perfect, are they? Even though we try really hard to take the best care of you, sometimes we goof up."
Simon: "But you ARE perfect."
Mary: "Simon, YOU are perfect."
Simon: "Yeah, we're the same."
June 15, 2004 "The Terrible Paradox of Cancer"
Simon: "I feel like everyone's pushing my body to make my cancer go away. . . It feels like if I'm well, my cancer is well. I just want my body to do it on its own."
June 14, 2004 "Bone Pain"
Simon: "It hurts bad!"
Mary: "People say that bone pain is very hard pain."
Simon: "It is."
Mary: "I wish I could take it from you."
Simon: "If you took my pain, then you wouldn't be able to take care of me."
Mary: "You mean, you'd be better, but then I couldn't take care of you?"
Simon: "Yeah, like take care of me if I get sick. Or watch out for me."
Mary: "Or help you with your homework? You mean, like normal taking care of you?
June 14, 2004 "Big Pain"
At bedtime, Simon felt a sharp, burning pain in his right front rib.
Simon: "I feel like I'm going to die from my cancer."
Mary reported this conversation to the hospice nurse, who said, "That's one of the first signs that it's starting", referring to the dying process. A couple of days later, Mary checked with Simon for clarification. He said he had "just been saying that" because the pain was so severe. Back to hypothesis number one: Simon is not aware and/or not admitting that he is dying.
June 14, 2004 "Getting Attention on Mom's Birthday"
This morning, Simon was up early to play GameCube with Markus. When I (Mary) lumbered out of bed and came down to see them, Simon made this comment:
Simon: "I'm the boy of the birthday girl!"
[Thinking over how that didn't sound just right, he tried again.]
"I'm the boy of the birthday *mom*."
I later commented that he found it hard to think of me as a "girl" and needed to rephrase it. He dismissed that idea and told me, as if revealing a clever strategy,
Simon: "Actually, I just said that to get your attention because you weren't paying any attention to me."
June 12, 2004 "Feeling It"
Simon: "I feel very sick and weak."
June 11, 2004 "Observations at Bedtime"
While getting settled for bed time:
Simon: "My cancer is serious work."
After the lights were out:
Simon: "I think my cancer is all doing what the boss says."
Mary: "Who's the boss?"
Simon: "Maybe it's the first cell, the first one that grew wrong. That's the biggest one, and he tells everyone what to do.
It feels like there's a battle going on in my body, and the cancer is ahead."
June 9, 2004 "Feeling It"
Waking up, Simon put his hand to the top of his forehead, where there is a growing bump from the tumor in his skull bone.
Simon: "Is this cancer?"
Simon: "No wonder I feel like something is taking over my brain sometimes. Something is gently pushing on my brain.
Later that morning, Simon felt a sharp pain in his leg. He looked up desperately at us and cried,
Simon: "I need more chemo!!!!"
June 8, 2004 "Love Battle"
Waving a wand with a little heart balloon on it (a post-Valentine's gift from UCSF Hem/Onc), Simon acted out an inspiration that follows countless hours of play with Yu-Gi-Oh and Pokemon.
Simon (in a perfect tone of gleeful irony): "This is a LOVE attack. Pshoooo! My attack hits my opponent HARD. Hearts bounce off him in every direction. There is so much love, he can't attack back!"
June 8, 2004 "Limping Again"
Simon: "Mom, I'm limping. See how I walk?"
Mary: "Yes, a little bit."
Mary (worried): "And you're saying ouch when you walk."
Simon (brightly): "That's because I just stepped on Miriam's barrette!"
June 4, 2004 "School's Out"
Simon brought home many school papers and memories this week, including his beloved Poetry Notebook. His first-grade class started each morning with a new poem. They read it together for rhyming words, comprehension, and for fun. Simon opened the notebook up to read a few favorites.
Simon (beaming): "I can't believe I just see a word and, Foosh! I can read it!"
SIMON SAYS Archive
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.
SIMON SAYS June-August 2004
NEW SIMON SAYS January-May 2004
NEW SIMON SAYS 2003
NEW SIMON SAYS October-December 2002
NEW SIMON SAYS January-September 2002 Leftovers
SIMON SAYS September 2002
SIMON SAYS August 2002
SIMON SAYS July 2002
SIMON SAYS June 2002
SIMON SAYS May 2002
SIMON SAYS April 2002
SIMON SAYS March 2002
SIMON SAYS February 2002
SIMON SAYS December 2001/January 2002