Finding Chika, page 6
“Them,” she says.
Lesson Three
A Sense of Wonder
We took you to Disneyland once, Chika. Do you remember? It was after the radiation treatments. You had been wondering about Sleeping Beauty’s Castle, which they show at the start of every Disney movie. “Is that real?” you’d ask, and we’d say that it was, and someday we would take you to see it. One night, after putting you to bed, Miss Janine and I looked at the missing patch of hair above the back of your neck. Your forehead was perspiring. And we said to each other, “What are we waiting for?”
We made the reservations. We flew to California. I bought tickets for a weekday, hoping for smaller crowds, and we arrived before the park even opened.
What I remember most is what you did first. We entered through Main Street, passing souvenir shops. The rides were up ahead, and I wondered which would make you scream, “Can we do that one?”
Instead we passed a small pond, and a gray duck wandered out of the water. And with Astro Orbitor to your right, Thunder Mountain to your left, and Sleeping Beauty’s Castle straight ahead, you pointed down and yelled, “Look! A duck!” And you chased after it and giggled wildly, “Duck! Duck!”
I glanced at Miss Janine, who was smiling, too. With all those amusement park attractions calling, you got low to marvel at another living creature.
* * *
If the first words from a child’s mouth are “Mommy” or “Daddy,” the next word must be “Look!” That’s how it felt to me, anyhow. As an uncle, I watched countless times as nieces and nephews held up scribblings—“Mommy, look!”—or prepared to pool dive—“Daddy, look!”—or grabbed a toy off a store shelf—“Uncle Mitch, look!” As dutiful family, we would nod and say, “Very nice” or “Wow.”
But I confess a sense of disconnect. It was never as fascinating to me as it was to them.
Then you came along, Chika. And maybe because I’m older now, or maybe because your eyes were so much wider than mine, or maybe because it’s simply different when the child is in your care, something stirred. I began to lean over, to see tiny miracles the way you saw them. Baby ducks running. Frogs hiding in the weeds. The wind lifting a leaf you were about to grab. One of the best things a child can do for an adult is to draw them down, closer to the ground, for clearer reception to the voices of the earth.
You did that for me, Chika. We buried in leaves. We studied ants in the driveway. We rolled in snow—which astonished you the first time you saw it—and made your very first snowman. You put me on the other end of a magnifying glass or a toy telescope, and through those lenses, I could marvel at the world the way you did. You were an unfailing antidote to adult preoccupation.
All you had to say was, “Look!”
Look. It’s one of the shortest sentences in the English language. But we don’t really look, Chika. Not as adults. We look over. We glance. We move on.
You looked. Your eyes flickered with curiosity. You caught fireflies and asked if they had batteries. You unearthed a penny and asked if it was “treasure.” And without prompting, you knew discovery should be shared.
“You smell it,” you would say, holding out a fragrant flower.
“You eat it,” you would say, holding out a chocolate candy.
So I did. I followed your lead. I ran after you sledding. I rode behind your carousel horse. I splashed after you in the swimming pool, remember? You invented a game where one pool edge was America and one was Haiti and you paddled between them, bringing rice and beans back and forth, saying, “Here you go! Eat them! Yum!” I don’t know where you came up with that, Chika, or why it made you cackle with laughter. But I swam beside you from country to country, and your imagination was a thing to behold.
Children wonder at the world. Parents wonder at their children’s wonder. In so doing, we are all together young.
* * *
So you taught me that, Chika. Or rekindled it, if that sense of wonder remains a pilot light inside us all. There was such a timeless quality to your enterprises—crawling under tables on a secret mission, setting up tiny cups for an imaginary tea party—that it almost erased the urgency that hung over you.
But my receptors, being the grown-up kind, could not ignore that urgency.
The relative success of the radiation treatments had boosted our hopes, and even boosted your lips and left eye, closer to a normal symmetry. Your walking improved. You ran and danced. The summer passed and you were better than before. So, progress, right?
Still, I had been warned by doctors that this could be a “honeymoon” period, that the invader in your brain stem was “dormant” but not gone, a volcano regathering.
Be vigilant, I told myself. Be wary.
* * *
This was brought home to me during, of all things, a college football game in mid-September, at the massive University of Michigan stadium, which is affectionately called The Big House.
There were more than a hundred thousand people there that Saturday, and from my perch in the press box, where I had come to write my sports column, I glanced down just before the game began to see a family walking onto the field. The public-address announcer bellowed, “Joining the captains for the coin toss is Chad Carr. Our thoughts and prayers are with the Carr family.”
I swallowed hard. The Carr family meant Lloyd Carr, the former Michigan football coach, whom I knew well, his son Jason, Jason’s wife, Tammi, and their three children, including their youngest, Chad, who was four years old, and whom the announcer had individually recognized.
Because Chad Carr—like you, Chika—was suffering from DIPG.
I watched him carried out, listless in his father’s arms, a beautiful child with a mop of blond hair. His battle had become a well-known story in Michigan, the subject of TV news reports and articles. I had spoken with Tammi several times. She told me all she knew about the disease, and introduced me to a community of families, all climbers on a worldwide DIPG mountain, sharing what ledge to grab, what slips to avoid, and sometimes, painfully, the news of those who had fallen. These families had a trust that strangers otherwise would not, phoning each other on nights and weekends. But with no historical path to defeat DIPG, they all, at some point, had to make a choice, without assurance it would work.
I dreaded that part of the conversation: “So what do you think you’ll do?” It felt like those disaster movies, where one group decides to take the roof and the other takes the stairs, and you know they won’t both make it out alive.
Our thoughts and prayers are with the Carr family. What did that mean? Had there been a setback? I knew his parents were trying everything. He was in his twelfth month since diagnosis. You, Chika, were in your fourth.
A honeymoon period. Dormant but not gone. The doctors’ warnings never left my mind. I came home that day and you were eating with Miss Janine.
“Mister Mitch, we are having pink fish!” you yelled, meaning salmon. I pulled Miss Janine aside.
“Chika’s having a good day,” she said.
“I see that.”
She looked in my eyes. “What’s the matter?”
I hesitated.
“It might not last,” I said. “We’ve got to keep pushing.”
One night Janine is reading Chika a Veggie Tales book. It talks about believing in God.
“Does God have powers?” Chika asks.
“Yes,” we say.
“Is He brave?”
“Yes.”
“Does He protect horses?”
No idea where that came from.
“God protects everything,” we respond.
“God created the whole, wide world,” she says, singsongy, “and the uni-versity!”
“The universe?”
“Yeah, yeah, the universe. Whatever.”
Me
I went to college with several guys who became doctors. I remember visiting one of them during the 1980s, when AIDS was rampant. I said something about how unbeatable the disease seemed.
“They’ll find a cure for AIDS faster than they’ll find one for cancer,” my friend said.
That struck me. Years later, when Morrie Schwartz indoctrinated me to the world of ALS, I heard something similar. “They’ll find a cure for ALS before they find one for cancer.”
Cancer loomed like a dark cloud for as long as I can remember, impervious and imperious. I watched my uncle die from pancreatic cancer when he was forty-four—and I was twenty-one. My brother began a lifelong battle with cancer when he was just twenty-nine. Janine’s sister Debbie fought a fifteen-year war with breast cancer, before finally, defiantly, succumbing. We buried her at fifty-six.
But a child? A grade IV brain tumor? This was not a fight I had prepared for. As a result, my education was fast and eye-opening. It often left me angry. I already knew the incredible profits in chemotherapy, and how those profits led to an insidious push for that treatment: when patients suggested another approach, physicians could be condescending, dismissing alternatives as risky, unproven, even quackery.
Janine and I were hardly physicians. But we knew this much: there was no evidence of chemo success with DIPG.
A new way up the mountain needed to be found.
* * *
“Did you know,” a doctor named Mark Souweidane told me on a visit to Memorial Sloan Kettering hospital in New York, “that when we put chemo through an IV to treat a brain tumor, only three percent of it actually gets to the brain? There’s something called a blood/brain barrier, a membrane that’s very selective about what it lets in. Three percent. The rest just stays in the bloodstream.”
This was a revelation to me—and a strong argument against conventional chemotherapy. Why shoot arrows to try and hit a pin?
Souweidane, a tall, thoughtful man with close-cropped hair, was determined to find a better way. He had grown up in Michigan with a penchant for fixing things. Early in his career, he started working on DIPG. He thought he’d have it licked “in two years.”
Twenty-five years later, he was still crafting a battle plan. He’d begun a clinical trial of something called “convection enhanced delivery” (CED). Simply put, CED got much closer to the problem by placing a tube into the brain stem and slow-feeding cancer-killing drugs directly into the tumor.
The approach was risky. Putting anything directly into the brain always is. And as a trial, it meant all sorts of paperwork, agreeing to be studied, multiple trips back to Sloan Kettering for follow-ups. And no guarantees.
But here was a compassionate doctor focusing directly on DIPG, and Chika qualified for his program. If we were to really climb this mountain, if, as Janine said, “Why can’t she be the first?,” we would have to trek a new route.
We booked a hotel room.
We packed a bag.
We flew to New York City.
We are all in the car. I am driving. Janine and Chika sit in the back.
Chika starts singing.
“Doe, a deer, a email deer . . .”
“It’s ‘female,’ sweetheart,” Janine says.
Chika stops.
“What?”
“A ‘female’ deer. Not an ‘email’ deer. Female means ‘a girl.’ Those are the words.”
Chika thinks for a moment. She crosses her arms.
“No!”
“No?”
“It’s my mouth! I can say what I want!”
You
I want to write about your voice, Chika, because I think about it often, and I hear it all the time.
Every child has a feature that jumps out when you meet them. The kid with the long curls. The kid with the weird laugh. Yours was your voice. It reflected you perfectly. It was a chameleon, ever-changing. High-pitched and booming during the day. Lilting and tender at night. A sweet sandpaper in the mornings, so scratchy that Miss Janine and I would privately joke, “She hasn’t been smoking, has she?”
It was a drawled-out “Yeaaaah” when you reluctantly agreed with us; it was a cannon shot “WHY?” when you didn’t get your way. It was the whimper of a fairy when you said, “I’m sorry,” and a peacock’s squawk when you won a game. (I remember us playing tic-tac-toe and you cooing, “Bye-bye!” when you won. Trash talk from a five-year-old.)
Your voice was made for music, Chika, you had great pitch, and you often sang softly to yourself in the evenings; but when you wanted to, you could belt like Ethel Merman. One time, Miss Janine was helping you put on your nightgown, and as you wiggled through the sleeves, you were singing “L-O-V-E” by Nat King Cole, which they use in the movie The Parent Trap. When you got to the end, and sang that love was meant for me and “YOUUUUU,” you spread your arms and threw back your head, as if a massive concert hall audience were wildly applauding. What joy you brought to your performance!
Your voice was a weather vane, it told us how your wind was blowing. When we flew to New York, you were particularly verbal: you asked me many questions, you were funny with the flight attendant, and you counted down from twenty until the wheels touched the tarmac. As we rose to deplane, a man who’d been sitting behind us said, “Excuse me, I just have to tell you, your daughter has the sweetest voice.”
I was so touched by that. I made sure you thanked him for the compliment, never mentioning the effect the words “your daughter” had on me.
They say eyes are the reflection of the soul, Chika, but your voice was its echo, and we miss it every day. It was all the things you are, or were, or are still somewhere else, when you are not here with me in the mornings, rolling on the maroon carpet.
Us
“Mister Mitch?”
Yes?
“I didn’t like New York so much.”
You hated it. That’s what you told me.
“I don’t hate things now.”
She flips onto her back.
Well, you liked it at the beginning.
“I liked the big toy store.”
You sure did.
“But not the hospital.”
Most people don’t like hospitals.
“Why did you take me there?”
To New York?
“Uh-huh.”
I push back in my chair. I think for a moment.
Hope, I say. Do you know what I mean? Hope? Is it a good reason to do something?
“Yeah,” she sighs, rolling onto her belly. “It’s a good reason.”
* * *
By the time we flew to New York, Chika had become quite used to air travel. She handed her ticket to the TSA workers. She marched through the metal detectors in her light-up sneakers. She often needed to use the bathroom, and if we traveled without Janine, I would guide her to the airport ladies’ rooms, then stand dutifully outside, looking at my watch.
One time she was taking particularly long. I began to worry. A middle-aged woman in a long coat saw me shifting on my feet and said, “Can I help you?” I explained the situation, and she kindly went inside and yelled, “Is there a Chika in here?”
A long pause.
“Who is calling me?”
I suppressed a smile.
“There’s a man waiting outside for you,” the woman said.
“I know, I know!” Chika hollered back. “That’s Mister Mitch!”
When she emerged, she put her little hand in mine, her fingers moist from washing. “I had to poop,” she said, and we walked on.
* * *
I realize in reading these words that it is easy, at times, given Chika’s personality, to forget about her illness, and there were moments during that first year when we almost did. She was so often joking, dancing, her energy so boundless, that to the outside observer, no one would guess there was anything wrong. Even as her face and body changed, she marveled at herself in the mirror, and shook her newly substantial hips. Many kids would have at least asked why they were getting bigger. But Chika had such a bedrock of self-esteem. Nothing in a mirror seemed to shake it.
Still, certain words never left my mind. The honeymoon period. Dormant but not gone. It was what pushed us to New York in the first place. We didn’t want to hold the tumor at bay; we wanted to eradicate it.
The night before Chika’s CED procedure, Janine and I walked her around a jammed Times Square. She marveled at the multistory billboards and neon lights. Characters dressed as Spider-Man, Olaf, and Buzz Lightyear wandered freely through the crowds, and she ran up to them, wanting to talk. As we were leaving, one character removed his giant head and ran his hands through his sweaty hair. “Hey!” Chika squealed. “There’s a man inside Mickey Mouse!”
Later, we went to the massive Toys “R” Us store, four stories high, with a small Ferris wheel inside. The three of us squeezed into a pink cart. Chika laughed when it started to move but hooked her arms around Janine’s as it rose, making a frightened whimper.
We were feeling nerves of our own. Earlier in the day, I had again signed forms recognizing the risks of Chika’s upcoming surgery. This time “paralysis” and “death” were among the potential outcomes. Dr. Souweidane, who was passionate about this trial and used the word elegant in describing the science of cancer research, signed them, too.
He then said he wanted to ask me something, and I said all right. He was fascinated by people’s motivations, he explained, so could I tell him why I chose to do this? To bring Chika up from Haiti, pay all her medical expenses (at the start, without health insurance, most of Chika’s treatments required us paying out of pocket) exploring all these various options, when she wasn’t my child?
I was taken aback. I had never been asked “Why?” before. I think I answered that I never saw it as a choice. And whose child she was really didn’t matter.
But then I had a question for him: Why is it that certain doctors, experts in the field, will advise you one way about battling cancer, while others equally expert will advise you another?
He crossed his legs and nodded, as if I’d just turned a tumbler in a lock. “The truth is, we don’t know. Even in this trial, I don’t know if this is the right agent that I’m using. Nobody does. But we can’t just sit there like we have for decades, doing the same old thing.”
