Last night, not for the first time and probably not for the last, we made our five-year-old choose between drinking poison and having us force it down her throat. We did so calmly, patiently, quietly, never raising our voices or becoming angry. We’ve had too much practice at this to make the mistakes of the early days. Perhaps with more practice we can somehow find a way to make it a game, some way of making it all easier. For now, we simply let her know, with quiet patience and love, that this is not optional, and if she doesn’t take the poison herself, we will make sure it gets into her.
It isn’t always a long struggle. Some days she poisons herself without complaint, getting it over with in order to get on with life. But not very much, of late.
The poison in question is temozolomide, a chemotherapy agent that’s specifically used to treat brain tumors. I once read the label, with its biohazard trefoil, and stopped when I saw the word “cytotoxin”. That means “cell poison”; it attacks cells that are dividing, as cancer cells always are. But it attacks all dividing cells, not just malignant ones. A growing five-year-old has a lot of dividing cells, and we are poisoning them all. We just hope that we’re poisoning the cancerous brain cells more than other cells.
But her brain is trying to grow, too.
Temozolomide is an oral medication, usually in capsule form. However, for kids who haven’t learned the trick of swallowing four large capsules in quick succession, its toxins are suspended in a gooey liquid compound that tastes vile. I know; I tasted it, so that I could better understand her struggle. Worse still, it can’t be flavored. We’ve asked — begged — more than one pharmacist, but it cannot be combined with flavoring agents. So she takes her poison straight. At home. For days at a time.
When she asks why she has to take something that’s “too icky”, we remind her (even though we know she knows why, just as we know why she asks) that it’s to keep the “bad rocks” from coming back. That term is a holdover from when Rebecca was three and Kat had to have some masses removed from her abdomen, and “bad rocks” was the best way to explain to Rebecca what was being taken out of her mommy. We thought she was too little to have to worry about cancerous growths, so we simplified things to make sense to her. We still think she’s too little to have to worry about cancerous growths, but we can’t be euphemistic any more.
And if we ask her what will happen if the bad rocks come back, she says, “Not telling” in a small, scared voice. This is actually a common reply from her, but usually it’s said with a smirk and a gleam in her eye, the one that kids get when they think they’re getting away with something and it seems like the biggest joke in the world. When she refuses to tell us what will happen if the bad rocks come back, it’s because she understands all too well. She understands better than we can bear.
We know she understands because when we were home between her surgeries and the radiation treatments, twelve days of having the family together in the midst of everything, Rebecca got very mad at her sister for not letting her play with a toy. “It’s for kids eight and up,” Carolyn said, reasonably. Rebecca, of course, found this line of reasoning lacking, and came storming into the kitchen. “Carolyn won’t let me play with that toy and I have to play with that toy!” she shouted. We explained that it was in fact for older children, and that she certainly might want to play with it, but that wasn’t the same as having to play with it. “I have to!” she shouted again, her voice rising almost to a scream, breaking with angry, anguished sobs, “I have to play with it now because it’s for kids who are eight years old AND I’M NEVER GONNA BE EIGHT!!!”
I can think back to the first days of her illness, lying almost unconscious with so many tubes leading into and away from her, with relative dispassion, as if analyzing a movie. It might even seem like I’m doing that right now. But that moment of anger and fear erupting from our five-year-old daughter brings me to tears every time I remember it. I’m typing this part with tears streaming down my face; it’s taken me this long to be able to come to a place where I can write about it at all. Even now, I want to throw up. I want to die, if that could somehow save her.
Instead, I have to, we have to, make her poison cells all throughout her body and especially all throughout her brain in the hopes of killing off the cells that might kill her. All the other cells that die in the process, the good cells that are trying to grow more curly hair and develop her brain and lengthen her bones and help her grow up, are collateral damage. We tell ourselves that those innocent, beneficial cells are acceptable losses, and hope that it’s true. We hope that the damage we do trying to save her doesn’t end up killing her later.
In the end, she took the medicine herself, as she always does, choosing to be in control of how things happen to her. It took several false starts; for each, she calmed herself by sitting up straight, closing her eyes, and taking a deep breath. And then, as soon as the syringe touched her lips, she crumbled back into sobs, her body shaking with visceral rejection and misery. Not anger, even though it would be easier for us if she hated us for what we keep doing to her. If she blamed us for making her do this. It would be easier to be targets of her anger than witnesses to her hopeless, knowing, abject misery.
Finally, after all those tries and stalling tactics, she made her choice. She squared her shoulders, slowly put the syringe to her lips, and pushed the plunger, drinking it all down in two audible swallows. She then immediately drank half a cup of Gatorade in an effort to mask the taste. She doesn’t usually like Gatorade, but it’s what she asks for to go with her chemotherapy. So we give it to her.
But only after she’s poisoned herself.
People ask us how we’re holding up, and when we say we’re doing pretty good, we’re being honest. We know that we’re lucky to have to poison her, just like we were lucky to have to irradiate her. We’re beyond grateful for those opportunities. We are. But we’re also painfully aware of the nature of what we’re doing. We feel every last drop of the horror it is to be grateful to be damaging our baby; to have the good fortune to force her to choose, day after day, whether she will poison herself or we will do it for her.