Finding Chika, page 8
But there were also regular visits to hospitals, and blood tests, and constant MRIs of your brain, so frequent that one time, I was reminding you about lying still inside the machine, and you moaned and said, “I know, I know,” and made your entire body rigid, just to prove it.
Our hope was to get through one month then the next, like swinging from vines through the medical jungle. Despite the dire predictions with DIPG—nobody survives it—there was always the chance something radical might be developed, some new laser treatment or stumbled-upon medication. A doctor at Stanford was having early success with a chemo drug called Panobinostat. There was talk of a progressive clinic in Mexico. A London-based group was doing multiport CED deliveries, much like Dr. Souweidane at Sloan Kettering, only with four catheters at a time.
Every night that you said your prayers, we later said our own, silently asking for someone in a lab, maybe halfway around the world, to be peering through a microscope and whispering, “Look, it’s working.” You reach for fantasies like that, Chika, when you need a weapon to beat the unbeatable. Your tumor had been operated on in June, diminished by radiation in July and August, and unaffected by other treatments from September to the following March.
That was good news and bad. No matter what we tried, including the CED process—which we actually repeated a few months later in New York—the tumor held its ground, a bear in a cave, not growling, but not going anywhere, either. The treatment Dr. Souweidane had put directly into your brain stem—which glowed green on a computer screen, verifying its excellent distribution—nonetheless had no real effect. I remembered my conversation with him (“We don’t know if this is the right agent”) and fought the haunting sense that, despite their white coats and laboratories, these doctors, against this disease, were flying in the dark.
* * *
So meanwhile, Chika, we focused on making good memories. In January, after the Haiti visit, we organized your sixth birthday party, at a loud, animal-themed restaurant called The Rainforest Cafe. You were surrounded by kids—nieces, nephews, our friends’ children—and you ran around the tables wearing a headpiece of stitched candles. We cheered when the cake came out, and Miss Janine and I held hands and whispered, “Eight months,” remembering Dr. Garton’s dire prediction that you might not live beyond four.
In February, I took you sledding for the first time. You cringed and shut your eyes at the top of the hill, but you shrieked in delight all the way down. When I caught up, your cheeks were wet from sprayed snow and you were laughing so hard you could barely get out the words: “Can we do it again?”
In March, we arranged for swimming lessons, because swimming was something you adored. You wore a bathing cap and goggles and looked like a pint-size aviator from the 1920s. You squealed when you splashed in and squealed when you resurfaced and you yelled, “Miss Janine! You come in! You come in!”
And then one day in April, having left you at your lesson, I drove to work. Ten minutes later, my cell phone rang. It was Miss Janine, but her voice sounded different, it was hurried and panicky.
“Come home right now. Chika just threw up in the pool.”
“Malè pa gen klakson.”
[Misfortune doesn’t have a horn.]
—Haitian proverb
Lesson Four
Kid Tough
Chad Carr passed away.
The cherubic little blond-haired boy whose father carried him onto the Michigan football field died exactly fourteen months after his DIPG diagnosis. I shivered when I heard the news. Janine started crying.
Because his grandfather was a famous coach, Chad’s death made news across the country, and brought a rare spotlight to this horrific disease. People were reminded that Neil Armstrong, before he ever walked on the moon, lost his two-year-old daughter to the same affliction in 1962. Little had changed in all those years. DIPG remained a wrathful thief, preying on children, robbing families of their present and their future.
The Carr family started a foundation in their son’s memory. They called it Chad Tough. And while you are not here for me to read this to you, Chika, I want to say what I have learned about that word, tough, because children, especially sick children, have a toughness unique to their young souls, one that can comfort even the fretting adults around them.
This is something you taught me.
This is fourth on my list.
Let me share an example. There was a night in Sloan Kettering hospital, during our second try at the CED process, when you were again being infused with the radioactive iodine antibody. It traveled from a large box, through a long tube, and down the catheter into your head.
This was around 3:00 a.m. I was sleeping in a chair across from your bed behind the leaded half wall. For some reason, my eyes flicked open, and in the darkness, I saw you standing right in front of me, your head tilted, like something from a horror movie. The catheter was poking up from your cranium, its cord stretched back as taut as a tightrope.
“Chika!” I screamed.
“I want to go to the toy store,” you rasped.
I rushed you back to the bed, praying you hadn’t yanked the catheter loose. I yelled for the nurses, who raced in, stunned. For the next hour, we waited anxiously until Dr. Souweidane arrived. He, too, was astonished. None of his patients had ever gotten out of bed during that procedure, let alone walk across a room.
Thankfully, you did no damage, and we all collapsed with relief. Come morning, you barely remembered it.
Kid Tough. I have been to many children’s hospitals, and every visit pays witness to the word resilience: youths playing board games during chemo infusions, or holding IV poles as they hurry down hallways to an arts and crafts room.
You had that resilience, Chika. You had it in hospitals. You had it at the orphanage. In truth, you had it from your first week on Earth, when you slept in the fields with your mother and sisters. Even at the mission, when nearly all our kids contracted a painful, mosquito-spread virus called chikungunya, you simply lay in the gazebo with a cold towel on your head, enduring the symptoms.
That day you threw up in the pool, I rushed home to find Miss Janine holding you. You were wrapped in a towel, your eyes were lowered, and you smelled of chlorine. Still, you did not complain. You were mostly upset that you couldn’t keep swimming.
We made a fast appointment at Mott’s, where you had undergone your initial surgery. A small team there was following your case, two doctors in particular: a pediatric neuro-oncologist named Patricia Robertson (you called her “Dr. Pat”) and a star researcher named Carl Koschmann (“Dr. Carl”), who, if he removed his white coat and pulled on a T-shirt, could easily have been imagined in the front row of a rock concert.
They made an interesting pair, at least thirty years apart in experience. You would walk for them, talk for them, have your reflexes and eyes examined by them. You got so used to this, you yawned your way through it. But they were measuring you on their own kind of growth chart, Chika, different from the pencil-marked beam in our kitchen.
Shortly after that pool incident, and eleven months after your original Haitian MRI, they told us the news we hoped we’d never hear:
The Invader had stirred.
The latest scans showed the tumor was growing. The small changes we had noticed—your left eye being less responsive, your gait being off—were related to this. The imbalance and pressure may have led to your vomiting.
Dr. Pat recommended we rev up the drug treatment. We debated the idea. Drugs against this foe still mostly meant chemotherapy. And chemotherapy hadn’t cured anyone of DIPG. We called everyone we knew, seeking alternatives. But time was passing, and you were getting worse.
So, as much as we hated it, we slid you into the world of medications, because we had to keep fighting, to keep swinging for that next vine. Miss Janine read voraciously on brain disorders and consulted with cancer health experts, so in addition to the drugs the doctors prescribed, she added vitamins and supplements and probiotics to keep you strong. She gave you a giant “shake” of supplements every day—chocolate, vanilla, or strawberry flavored—which you started out liking and soon had to be coaxed into drinking.
Thankfully, you had no problem swallowing pills. You often made a game of it. Once in the back of a car, I placed a single pill on a spoonful of applesauce, and you bragged, “I can do two.” I said, “Really?” and you said, “Watch. Watch!” And you placed two pills in the applesauce, gulped the spoon, then stuck out your tongue.
“No way!” I said.
“No way . . . ,” you repeated, happily, “José!”
You never asked what the pills were for. Instead you kept searching for laughs, as you did even in the unlikeliest moments. As your walking worsened, you’d sometimes stumble. But you’d grin and shout, “I fell on my BUTT!” When your foot began to tingle, a neurological consequence, you’d stomp it and say, “My foot is tickling me.” As your eye and mouth drooped, you stared in the mirror and made funny faces, as if to challenge your new expression.
Watching your struggle was so difficult, Chika, and knowing what to say became equally hard. One day I saw you walk unsteadily to a shelf of toys. You grabbed a doll and fell backward. Then, as if deciding that walking wasn’t worth it, you crawled with that doll tucked into your chest, until you reached a space beneath the kitchen island where you set up shop, bringing the world down to ground level.
I teared up, Chika, and I turned away so you wouldn’t see me. As you played on the floor, accepting the new rules, your toughness far exceeded mine, and gave us comfort, even as we were trying to comfort you.
Us
“Mister Mitch?”
Hmm?
“Christmas is coming.”
She sits in her little chair, wearing a blue dress, slippers, and a pink earflap hat. She pulls the flap cords down around her cheeks. She has appeared several times since vanishing on Thanksgiving morning, but her visits are shorter now, and she wears different clothes each time.
Do you remember all your Christmases? I ask.
“How many did I have?”
Well, you had two with your mommy.
“But I was so LITTLE!”
And one with your Godmommy.
“How many at the mission?”
Three.
“How many at your house?”
One.
“When?”
The last year.
She lets go of the earflaps.
“I know, I know.” She sighs.
What?
“That’s not a lot of Christmases for a little girl.”
I didn’t say that.
She taps her head. “You said it here.”
You
One day I came home to find you playing a card game with our friend Nicole. You drew a card and she drew a card, and she made a joke and you laughed. It seemed perfectly normal, except Nicole was thirty-eight years older than you.
And she was on the younger end of your American playmates.
You went camping with our friends Jeff and Patty, who were already grandparents. Miss Janine’s sisters Kathy and Tricia, in their fifties, would take you to get your nails painted. Our friend Dr. Val, in her sixties, would take you home to play with her dog.
You had a network of companions who ranged from two to five decades older than you, and while they were mostly our work colleagues or familial connections, you called them “my friends.” You had a remarkable skill for collecting anyone you met; they would always ask to see you again. There was Margareth, a Haitian-born case manager; and Lyn and Carmella, both masseuses; and Anne-Marie, our sister-in-law; and Frank, Mark, Marc, and Jordan, who worked with me. Yoga teachers, deli owners, musicians, nurses. You were a pied piper of grown-ups, many of whose children were out of the house and who found in you a brief reconnection with the wonder of little souls.
Of course, you would have preferred some little souls of your own. And had Miss Janine and I been of normal parenting age, our nieces and nephews would have been your mates. But they were grown now, too. We tried taking you to places with other children—fairs, church events, holiday celebrations at a local heath cub. But sometimes other kids didn’t know what to make of you and your challenges, and you’d walk back to us and say, “They didn’t want to play with me.”
You tried so hard. You jumped in line at a Halloween dance. You presented tea sets to other girls. But with new kids, you would get tongue-tied, you, of all people, and just hold out whatever you had, and they would sometimes take it and walk away. I studied your vacant look, hoping they would come back. It broke my heart.
You missed going to school. We tried to re-create that, but, given the constant medical attention, we could only homeschool you with lessons sent by my sister, Miss Cara, who runs our school at the orphanage, and friends like Miss Diane, a retired teacher who sat with you for hours doing spelling and mathematics. We even dressed you in your Haitian school clothes, a purple shirt, navy blue skirt, white socks and black shoes, so it would feel more like the mission.
But it wasn’t the mission. The mission would have meant dozens of children, laughing and yelling and racing to their classrooms, not a lonely kitchen table overlooking our backyard.
* * *
Of course there were a few children you befriended in America. One of them was our nephew Aidan, who was eight when you arrived, and who took to you immediately. A soft-spoken, gently mannered boy, with thick, cowlicked brown hair, he played anything you wanted to play, and watched whatever you wanted to watch. And it was pretty clear, after several months, that you were, as my grandmother used to say, “sweet on him.” You dressed up when he was coming over. You got bashful when he arrived. You were quieter, even deferential.
One time I took the two of you to an arcade near our house, and I changed a ten-dollar bill into quarters and put the quarters into Dixie cups. Had it just been you and me, you might have jokingly tried to take my cup. Instead, you looked at Aidan and said, “I have too much,” and poured half your cup into his.
You and Aidan went on boat rides together and to the aquarium together, and one time at his house you danced together to a video of the Cha Cha Slide, and when he fell down you slapped him on the butt.
When you spoke about growing up and getting married, which you did all the time, we would tease you and mention Aidan’s name and you would get a silly grin or say, “I dunno . . .” or “Maybe . . .”
And then one summer night, more than a year after you’d been with us, when your walking had deteriorated and your left eye no longer blinked and your therapies included sitting for hours with a needle in your arm, you were lying in bed, having just watched a princess movie. And you asked if you could one day marry a prince.
Miss Janine said, “What about Aidan? He’s not a prince, but he’s a really nice boy. Would you want to marry him?”
You made a face. “Aidan will not marry a girl like me.”
We looked at each other.
“Why do you say that, Chika?”
“Because Aidan will not marry a girl who cannot walk.”
You said it so innocently, so matter-of-factly, that it robbed us of our breath. And while we recovered to offer the standard adult response, that love doesn’t care about sickness or health, inside we were trembling, because we saw in you something, with your disease, that we were terrified of seeing in ourselves.
Acceptance.
Although Chika is brave about almost every medical development, she is still scared of needles. She calls them “stickies.” She can handle MRIs, radiation, even a catheter to her brain. But her eyes travel to a needle no matter how a nurse tries to hide it, no matter which way I cradle her head, and say, “Gade mwen, Chika,” look at me. It’s as if she can’t help but watch.
To make things worse, she is a difficult blood draw. Her veins hide. “A tough stick” the nurses call her. This means the thing she hates the most, they have to keep repeating.
Chika has started on Avastin, a tumor-starving drug. To infuse it, she needs an IV in her arm. This is always difficult. But by June of 2016, more than a year into her diagnosis, it has grown impossible. They cannot get a vein.
On one particular visit, they try twice on her left arm, wrapping the mustard colored tourniquet around her biceps, rubbing the alcohol swab, sticking her. No luck. She is screaming. They switch to her right arm, wrap the tourniquet, find a spot, swipe the alcohol, stick her again.
“Nope,” a nurse mumbles.
They bring in a vein specialist. She wraps a warm compress around Chika’s hand. She taps the skin. Doesn’t find a spot. She goes to the other hand. Repeats the process. “We can’t do more than four tries,” she notes.
She finally inserts a needle an inch from Chika’s wrist. Chika howls.
“Make them stop!” she cries out.
“They’re almost done, sweetheart, almost done.”
“Make them stop, Mister Mitch!”
My heart is racing. I’m imploring them to finish. The IV finally takes. But seconds later, there is blood in the tube. The specialist frowns.
“What?” I say.
“We blew the vein.”
They gather up their tools and force tight smiles as they leave. That’s it. No infusion today. A nurse fetches someone to talk to me about putting a port under Chika’s skin, inside her chest, because, she says, “This situation isn’t going to get any better.”
They offer Chika a cartoon sticker. She ignores it. I bundle her limp frame in my arms. Her cheeks are stained by tears. She gives me her hand, wet from wiping her nose, and whimpers something she never said before.
“I wanna go back to Haiti.”
Me
Few things made Chika happier than eating. She tried almost everything. I remember a group of us sitting outside on a warm summer night, feasting on Lebanese food, and Chika singing, “Baba . . . ghan-oush!”—the word fascinated her—then laughing and eating more of it, then repeating, “Baba . . . ghan-oush!”
