Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Thursday, November 06, 2003

Conversations With Steven

This is for my mom, who is constantly giving me little journals and telling me to write things down that my kids say or that happen with my kids so I can remember them when my memory starts failing me (as it already is):

In the hospital at 3 am the morning of Steven's surgery, just before he lapsed into severe pain and uncontrollable vomiting,

"Mom, are you awake? I'm so happy..."

As they were wheeling him into the operating room in a semi-comatose state (the tumor having compressed his brain to a point where he was in distress),

"The tumor. Can I see the tumor?"

In the recovery room after his surgery, so woozy he can barely speak, I have to bend my ear right next to his mouth to hear anything,

"Water." "Juice." "Tumor."
"Yes, Steven the tumor's out, they got all of it."
"No, tumor!"
"What? Oh, you want to see the tumor. I'll ask the doctor."

On the day after his surgery, amidst a sudden and unexpected burst of tears,

"I want to see Dr. Levy (the neurosurgeon). I didn't get to thank him. I didn't even get to meet him." (Steven was passed out when we met the surgeon).

As we were preparing to see the surgeon for his post-surgical followup:

"I want to thank him. He saved my life. I made him a card. I'm going to donate a dollar." (He clipped a dollar bill to the card)

One evening during a quiet dinner at the Ronald McDonald House, just Steven and me:

S: "What kind of brain tumor does Jake have?"
M: "Jake doesn't have a brain tumor, he has leukemia. Leukemia is more common than brain tumors, most of the kids here have leukemia. Since most of the kids are bald, you can tell who has a brain tumor by whether or not you can see an incision scar on their head."
S: "What is the difference between leukemia and brain tumors?"
M: "Leukemia is a cancer of the bone marrow, where your body makes blood. Brain tumors are a cancer of the brain."
S: "Which is worse, leukemia or brain tumors?"
M: "Some brain tumors are really bad, others aren't. It's the same with leukemia. It depends on which kind of leukemia or brain tumor you have."
S: "Is the worst type of leukemia worse than the worst type of brain tumor?"
M: "We'll have to ask Dr. Gajjar about that one."
S: "How bad is my tumor?"
M: "Your tumor is very fast-growing, and it has a nasty tendency to want to come back, more so than many brain tumors. Despite this, your tumor is more curable than many other types of brain tumors."
S: "Can my tumor kill me?"
M: "Yes, it can. If we chose not to treat it, it would kill you by compressing your brain. That's why we told you you had to have the surgery no matter how frightened you were. We were saving your life."
S: "Have any of the kids in the same trial I'm in ever died?"
M: "Yes. If you want more details about this, we'll ask Dr. Gajjar tomorrow. As a matter of fact, we'll run all your questions by him since he's a doctor and I'm mostly a computer programmer, he knows a lot more than me."

Dr. Gajjar's comment the next day:

"He asks better questions than most of the parents I see."

One night before bed,

"When I'm 30 and I write my autobiography, when I get to the part about the brain tumor, it's going to be pretty exciting."

Every night before bed,

"Please heal all the kids at St Jude's and help keep their families strong."

- Kathleen

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