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

Saturday, September 11, 2004

Steven of California, Brain Tumor

Finding Cures. Saving Children.

September 9, 2003, a day etched into my memory, not to be forgotten until the day I die.

He'd just turned 9, but he'd been having symptoms for the previous three weeks. I was terrified, I knew something of brain tumors and how they make themselves known.

Nobody believed me, I let myself be brushed aside because to be proactive would mean I believed he had a brain tumor and I never wanted to believe that.

Then, the MRI. Sitting in the room with him, like a bad flashback to the days with Kyra. The nurse not letting us see the images, asking us if he was our only child, commenting on how sweet he is.

We left the hospital with him. They said you'll get results within 72 hours. I called my pediatrician, crying, finally saying I have to know NOW, yesterday is too long to wait, I can't eat, sleep, I need to know. One way or the other, now.

The pediatrician calls back. Go back to the hospital. Now, you'll leave immediately, right? The neurosurgeon will be waiting for you, they saw something in his right frontal lobe.

Steven, who has been doing pretty well, is going downhill. Feeling sick, falling asleep. We wait in the neurosurgeon's waiting room, Steven lies face down on the floor and sleeps.

I say, can we get a room please, so he can lie down? They put us in a room. We wait 45 minutes to see the doctor.

Steven falls asleep. The nurse brings in the MRI films, they're sitting there in an envelope. I verify that Steven is indeed asleep, then I pick up the envelope. Doug says no, no, he's stricken.

I need to look the monster in the face. The monster I've been fearing, the monster that has taken all the joy out of my life for three weeks, the monster that I see every night in my dreams for those few moments I manage to sleep.

I open the envelope, there it is, that glowing abomination in his brain, growing in the center of his being, that growth that would dare to take our child from us.

Doug says oh my God and leaves the room to find the doctor. The doctor is meeting with someone else and Doug decides to come back and wait. The doctor comes in, says it's a very vascular tumor, malignant, probably ependymoma or PNET, we'll take it out ASAP, go across the street to the hospital and they'll admit you.

We start calling our family. Doug's sister Deb, Kyra's mom, I call her last, I don't want to visit any more tragedy on their family, but it can't be avoided any longer. Steven wants her to come, she finds somewhere to park her kids and drives all night from Santa Cruz to be there with him in time for the early morning surgery.

We go to the hospital. Family starts arriving. Both sets of grandparents, my sister.

More MRI's, this time his spine also. The type of tumor they think he has, it seeds through the cerebrospinal fluid, which means it could be anywhere in his brain or spine. They spend almost three hours scanning him, they are building a 3-D model of his brain that they will refer to when planning and doing his surgery. He's feeling pretty good during the MRI's.

We go back to his room, it's after 11:00 pm. He's hungry, we get him something to eat. I spend the night with him, everyone else goes home. I lie down in the chair-bed, I listen to the clicks of his IV pump. I sleep in fitful dozes of five minutes or less, really, it's worse than staying awake.

I hear Steven's voice. "Mama...". "What, sweetie?" "I'm so happy..." "Why? Is it because you feel how many people are caring and praying for you?" "Yes..."

A few minutes later he began feeling badly, the swelling in his brain was causing him to go downhill quickly. Heavy doses of steroids were supposed to help control the swelling and ease the symptoms, but through the night, he continued to get worse.

We had the most wonderful nurse that night, so compassionate, so caring. "Try to get some sleep", she tells me. "I can't, could you sleep if this was your child?"

Vomiting and vomiting, nothing in his stomach, his body going through the motions. Unbelievably severe pain in his head. It's 4:00 am, the nurse is trying to contact the doctor, anybody, who can give Steven something to ease his distress. Tries to get them in earlier to do the surgery, anything, anything but to keep watching him in such discomfort. She looks as distressed as I do to watch him in such pain.

He can't have any medicine until after the surgery, and the surgical team won't be ready until 7:00 am. The nurse and I do what we can to help him, cold washcloths, so completely inadequate against such pain.

Finally, its time to take him to the operating room. Steven is comatose, waking only to retch, collapsing in exhaustion after each bout. The family arrives, Doug, both sets of grandparents, Deb (who got there in time!), my sister. We try to be cheery and optimistic, we meet the surgeon.

The surgeon pushes his wheelchair down the hallway, Steven slumped to the side, mostly unconscious. Impossible to believe that two mornings before he was in school.

Watching him in that chair as he disappeared down that hall will be a vision forever etched in my memory, putting him completely in the hands of God and a surgeon we didn't know, admitting we were powerless to help him on our own.

Three and a half hours later, the surgeon called us to a room. The surgery was a success, they think they got all of it, there were no bleeding problems as feared.

We went to see him, his eyes still closed, woozy, slurred words, despite this it was clear to see that he was dramatically better, no more pressure inside his brain, the beast at bay for now.

Surgery Wednesday morning, home on Friday evening, who'd have thought it possible?

Thank you, dear Lord, for our son. Thank you, Dr. Levy, for removing all the tumor and not damaging his healthy brain tissue. Thank you, St. Jude, for giving him a second chance.

That's our Steven, St. Jude poster child.

-- Kathleen


Blogger Sleeping Beauty said...

((( Hugs to all of you)))) AND congrats Steven for winning!!!!

October 01, 2004 11:52 AM  

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