Sad news from BCCH. Justin M., Debbie’s son has relapsed (bone cancer) and lost most of his pelvis in surgery. We’ve learned he is taking the experimental chemo Topotekan that was offered to us. Justin has been told it is felt he will not survive. He’s 18 years old. Debbie said her son wanted to know everything, “always the truth” he told her. How do you tell your child they’re dying?
Monday, September 27
Day 4 since chemo Compound 506U78 was started. While the WBC (white blood count) and AGC (absolute granulocyte count) still drop the strangest thing I have yet seen is the blasts (cancer cells) rising from 0.16 > 0.22. I imagine a battlefield littered with dead and dying good guys, outnumbered by dark ugly killers that slash and slaughter.
Nicholas lies quietly under white sheets, his child’s face smooth and peaceful. He has no pain, no fever, no nausea, and while he sleeps there is no fear. I look but don’t touch, not wanting to disturb. My sturdy little boys I expected were wholly mine to love and feed and teach and discipline. Now, I’m weak with awe and such deep gratitude that tears slide down my cheeks. Our children are a beautiful painting, a priceless sculpture, a precious jewel, a gift that is ours for only a time.
Tuesday, September 28
I’m dancing in Nick’s room. He looks at me with sleepy but clear eyes. I wave a paper. At first I was afraid to look. Then I was confused when I saw the numbers. Realization that his marrow has bottomed out and the chemo has managed to annihilate the blasts popped me out of my chair with a whoop.
“Look! Look at this Nick! The dark and ugly killers are gone!”
“Mom?” He’s smiling at my crazy jig around the room.
We talk. He’s the most alert he’s been in a week. I tell him about his blood pressure drop. He gets a short, calm version. He doesn’t remember. Not the high, thin scream of his voice, his terror going through the roof because of his terrible experiences in this last year and he’s at his lowest and more sick and sliding, the bottom not far now.
In his breathy, wavery voice he says, “I would have gone to ICU Mom. You just had to tell me that I might die if I didn’t.”
He is a meltingly sweet mixture of boy and man searching for sense in a place that will never make any sense. He isn’t accusing but I can’t bear his perplexed brown eyes.
My insides churn. I struggle with telling him the thing that is so hard to even write – a wad of wet tissue beside me. The doctors thought it cruel to send you. It’s better to let you go than to keep hanging on doing torturous things to keep you alive… because you’re dying.
I say, “I know you would have gone to ICU. And we would have sent you.” I give him the, I’m The Mom look, and gently stroke his sunken cheek. “You’re here now Nick, just like you are supposed to be. And today you’re awake and this paper says the chemo kicked cancer’s butt.”
He softens into pure little boy features, and relief reflects in his eyes. I’m weak with gratefulness. I did the right thing by my son. I no longer feel like a coward. I lean over his bed and into each others faces our smiles spread from cheek to cheek.
Nicholas 11 years old and me 1998
