Finding Chika, page 10
“Go to sleep, sweetheart,” I said, softly.
You lay your head down. After a few seconds you mumbled, “Mister Mitch?”
“Yes, Chika?”
“What will you do while I sleep?”
“I’ll read,” I said. “And think about how much I love you.”
You nodded, your eyes glazed.
“That’s what I’ll do, too.”
At that moment, I didn’t care about who belonged to whom. I was yours, even if you were not mine. And as I stroked your forehead, which was hot to the touch, I knew I always would be.
Five
Courtesy of the author
Us
The New Year passes with no visit from Chika. I go to Haiti for the holiday, as I always do, and we celebrate by lighting sparklers and singing “Auld Lang Syne” and the kids write resolutions on notebook paper that I slide into an envelope. (“I will help clean the yard” . . . “I will not talk in class.”) We will open it twelve months later and see how they fared.
A special dish is served on New Year’s Day, soup joumou, a pumpkin-tasting delicacy made from winter squash, potatoes, vegetables, onions, garlic, and pieces of beef. The soup was forbidden for slaves in the late-1700s, and is consumed on January 1 as commemoration of the Haitian revolution that established independence in 1804. Across the country, no matter how impoverished, families sip this soup as a proud tradition, a literal taste of freedom. Some of our kids are old enough to understand this. The younger ones are just happy with the soup.
Every night, when devotions end, we sing a song to remember Chika. It’s the “L-O-V-E” song by Nat King Cole, which she used to belt out around the house. The kids sing it loudly, too, spelling along with the lyrics, clapping when the song says that V is very, very—smack!—extraordinary. At the end of the melody, they yell together, “One—two—three, good night, Chika!”
That night I go into the little girls’ room. Chika’s bed is still empty. The last time they saw her was that clipped visit when her fever and vomiting left her a shell of herself. She never returned. Maybe it was a blessing. Kids and farewells are a difficult mix.
When I get back to Michigan, it is snowing outside, and in the morning, I get a fire going in the fireplace. I turn to see Chika crawling out from under my desk, wearing blue shorts and a red-and-white-striped T-shirt.
“Arrrrrgggghh!” she yells, making tiger claws with her hands.
Good morning, beautiful girl, I say.
“I was trying to surprise you!”
You did.
“Then why you didn’t scream?”
Sorry, I say. What were you doing under there, Chika?
“Oh.” She studies her fingers. “You know. Looking.”
Looking for what?
She exhales and lifts her eyebrows.
“Fairy doors! What else?”
* * *
Mott Hospital had fairy doors. We knew this from our many visits there, including the one we had to make the day after Chika and I got home from Haiti. She was hot, listless, short of breath, so we drove her to the emergency room of a hospital near us, but after checking her blood counts and several other tests, a doctor there confessed to not being familiar with the drugs Chika was taking, and suggested we go quickly to Mott’s, where they knew her case.
“This could be something serious,” the doctor said.
Janine cried in the ambulance as I followed in a car out to Ann Arbor; we spoke via cell phone the entire way. “They said it could be sepsis,” Janine whispered.
“We don’t know,” I said, trying to stay calm.
As it turned out, the entire problem, and the reason Chika dragged through her final visit to Haiti, was a blood infection—caused by the port that the medical team had insisted upon. Somehow, bacteria had infected that port during Chika’s one and only transfusion with it.
As a result, she spent nine straight days in a hospital bed, fighting a raging fever and tested for everything from meningitis to tuberculosis. A lung nodule had them concerned for a septic embolism. Her antibiotics were switched and switched again. Lab cultures were grown and studied. All because of bacteria that entered her bloodstream through what Janine would forever call “that stupid port”—which, of course, was taken out of Chika immediately.
“I never wanted that thing,” Janine grumbled.
I felt as if she were blaming me.
“What were we supposed to do?” I said.
“Nine days she’s been here, Mitch. Look how weak she’s gotten.”
“But they couldn’t get a vein!”
She turned away.
“What were we supposed to do?” I yelled.
Janine and I argued more the worse Chika got. No surprise. It is hugely stressful, grappling with a child’s illness, wondering if you are making the right moves. You feel lost. Uncertain. One of you can feel confident when the other doesn’t, and you get angry at the difference. Half the time we were arguing to convince ourselves there was hope.
It found its way into little things with Chika. I would think some activity was safe; Janine would say it wasn’t. I’d think a TV program was OK to watch; Janine would not. We bickered over antibiotics, nutrition. Janine would say, “I don’t want her trying that” and I would say, again, “What are we supposed to do, nothing?” I think it all came down to the same thing: a fear of making the wrong move, or missing the right one. A fear of what was coming next.
It pained Chika to watch us disagree. She only wanted harmony. She would interrupt us by shouting, “OK-OK-OK-OK!” and waving her hands like a referee.
Then came a night when she was in the hospital, and Janine and I were both upset over something. I was shaking my head, angrily repeating, “I can’t believe this.”
Chika called out from her bed, “What are you guys talking about?”
“Nothing, Chika,” I said. “Don’t worry.”
“But it sounds saaaad.”
I walked over to her. “Yeah, sometimes things are sad in our lives, and sometimes things are happy. Like you. You’re a happy thing. You make us happy.”
She saw the frustration in my face, and began to tear up.
“Why are you crying, Chika?”
“Because,” she whispered, “I don’t know how.”
“You don’t know how to what?”
“To make you happy now.”
That was the last time we spoke of such things in front of her. And the beginning of Janine and I realizing, in the end, we only had each other. We’d read where many couples eventually divorce after losing a child. We were determined to stay off that path. It’s what ended disagreements before they got too wounding. One of us would mumble “I’m sorry, OK?” and the other would say “Yeah, I’m sorry, too” and we’d both exhale and steel ourselves for what came next.
By the time we took Chika home from Mott Hospital, her fight to stave off the infection had taken its toll. Her walking was worse. Her speech was slower. And she had a new partner, a PICC line catheter that came out of her right arm, through which her drugs and blood tests could now pass. We had to feed antibiotics, three times a day, through that line. It was covered with a little cloth sleeve and could not get wet, which meant showering was delicate, and swimming, which Chika loved to do, was off the table. It was summer, pool time, and that seemed so unfair.
Chika was just relieved to get home. She returned to her bed in front of ours. On her first morning back, Janine got up and lay beside her, and they started whispering, and pretty soon they were talking about Chika’s favorite subject: weddings. Janine asked Chika where she thought she’d meet the boy she would marry.
“A restaurant,” she answered.
I chuckled at her imagination. Then I realized Janine and I had met at a restaurant. We’d told her that once. Chika. Honestly. She remembered everything.
But all right. The fairy doors. They are little wooden portals, maybe six inches high, tucked into baseboards of various places in Mott Hospital. When you open them, there is a cartoon painted inside. Tinker Bell. A princess. People are encouraged to leave coins, so that a young patient might be surprised when he or she pulls open the tiny handle.
Chika was obsessed with finding these doors. She insisted on looking while still connected to an IV. Once I knew where a door was, I would sneak ahead—telling her I was looking for the fairies—and put a dollar bill behind each one.
“Look, a thousand dollars!” Chika would say, when she pulled the door open. (We never really taught her about money.) She’d put the bill in my hand, then start looking for another.
Watching her on that optimistic search, and passing rooms where I glimpsed parents with their heads in their hands, I realized something important: Hope is critical. It is almost mandatory to soldier through troubled times. Conversely, there is no affliction like hopelessness. I believe it is worse than anything that strikes the flesh.
We could not shield Chika from the tumor, or the pain, or even her own mortality. But we tried to project an aura of positivity, that we—the doctors and the nurses—all knew what we were doing, that life was still full of undiscovered treasures. Hopelessness can be contagious. But hope can be, too, and there is no medicine to match it. Chika’s believing in us helped us believe in ourselves.
Surely there is a future, and hope will not be cut off. That’s from Proverbs. We tried desperately to live that way, to believe in something good on the other side of all the little doors Chika opened.
* * *
“Mister Mitch.”
Yes?
“Where are your fairy doors?”
We don’t have them here. They’re only at the hospital.
“Nuh-uhhh.”
You saw them someplace else?
“Lots of places.”
Like where?
She rests her elbows on my knees and taps her index finger against her cheek. She must have seen this in a movie, a sign that a person is thinking.
“Germany,” she says.
“Children are not a distraction from more important work. They are the most important work.”
—Dr. John Trainer
You
Well. Since you brought that up.
There was much we didn’t tell you about your medical journey, Chika. Research. Phone calls. Videoconferences. We were determined to shield you from the morass, but as anyone who cares for a sick child will attest, finding a cure consumes your every thought. You stay up nights wondering where else to look, and rack your brain in case you might be missing something.
To this end, the Internet is both the best and worst invention in the world. It has become, for people fighting serious illnesses, a seductive, confusing, often maddening place, a raucous bazaar of hope and horror. The wrong search word will pull up sites and stories you don’t want to read, wild claims, heartbreak, accusations of fraudulent medicine, and countless entries beginning with the word What—“What are the causes . . .” “What are the treatments . . .” “What are the signs . . .” All you want to see is “What is the cure?” But it is never that simple.
I have read where years ago, Native American healers would rarely speak about their knowledge, or, in some cases, even identify themselves, so precious were their skills considered. The Internet is the opposite of that. You can find a thousand theories, contact a thousand practitioners, and never have the confidence you are not heading down a rabbit hole.
Early in your journey, Chika, I avoided the Internet for exactly these reasons. But after your blood infection, we needed to be more vigilant, to look beyond convention. You were already taking Panobinostat, the histone deacetylase inhibitor drug, because a Stanford doctor had seen some promise with it in mice. You’d endured a second round of radiation therapy, a risky, targeted approach, because that had been the only thing to deliver tangible results. We tightly controlled your diet. You drank your daily shake of supplements, even as you made a face while swallowing it.
But we were running out of vines to swing from. By this point we had come to know many DIPG cases. They often followed the same sad road map. Radiation. Chemo. A turn for the worse. A funeral.
Looking for an alternate story, we plunged, reluctantly, into the world of the Web. I read everything. Clinical trials. Facebook posts. I made calls overseas.
A program in London considered you, then said your progression and previous treatments “disqualified” you, a uniquely awful word, disqualified, as if you had broken some rule so you don’t get to be cured.
They did, however, suggest a Belgian doctor working in Germany who was open to cases like yours. He specialized in immunology. And he was focused on DIPG.
His name was Stefaan Van Gool. I contacted him via email and he got right back, and Miss Janine and I had a long Skype conversation in which he answered many questions. He seemed a brilliant man, and was affable, kind, a father of four girls with whom he played violin in classical music concerts. Most importantly, he spoke about treatments we had not heard of in America—a vaccine made of the patient’s own white blood cells and tumor antigens, to produce an immune system response that hopefully allowed it to attack the cancer. Our Michigan doctors didn’t know of his practice.
“But if you think it will help, you should go,” they said.
And so, as autumn began, and the kids at the Haiti mission went back to school, we booked airplane tickets and rented an apartment in Cologne, Germany, four thousand miles from our home. Sixteen months into your prognosis—and nearly a year longer than the doctors thought you would live—you were headed for yet another strange and new country, Miss Janine on one side, me on the other.
* * *
I want to speak about joy.
When I look back on our journey, there were times we didn’t give enough weight to it. In the later stages, your daily needs were so great. Dressing you took longer. Bathing you was a meticulous process. Your PICC line needed to be flushed and kept sterile. Lifting and carrying you required me or someone else always to be present.
Because of this, we sometimes overlooked the fact that, despite the physical challenges, your mind kept growing. Your thoughts deepened. And we might have missed the joy of your blossoming into a fully formed young person—had you not made sure to reveal it in unique linguistic ways.
One time I was reading a long email, and I sighed and mumbled, “Oh, boy.”
“Why do you say, ‘Oh, boy’?” you asked. “There are no boys here.”
“It’s just an expression, Chika.”
“Why don’t you say, ‘Oh, girl’?”
Another time, you asked for a glass of water. I warned you it was cold.
“Cold water, warm heart,” you said.
(Where did that come from?)
You once asked Miss Janine, “Can I have two husbands?” And when she asked, “How many children do you want?” you shouted out, “One!”
“Why just one?”
“Because that’s all I can CARRY!”
On a drive back from radiation, you asked, “Mister Mitch. Where are we going?”
I said, “Nowhere.”
“Can we go nowhere together?” you replied.
And one morning, down in my office, my phone rang. It was you calling on the other line.
“Mister Mitch, do you want to come play fluffy, cozy bed camp?”
I entered the bedroom to find you and Miss Janine beneath the covers. When I crawled under, you said, “These are the rules of fluffy, cozy bed camp. I am the boss. Miss Janine is the second boss. You can be the third boss. Now. Let’s play.”
If I could change anything from those moments, Chika, it would be to stay in them a little longer. Immerse ourselves so we never forget. I rarely use the word rejoice in daily life, but it is the word I am looking for here. Rejoice. Revel in the funny business. It is quite something, when I look at photos of those days, to see your tireless crooked smile while miniature golfing, although you could barely swing the club, or on trips to the supermarket, although you had to sit in the basket, or a visit to the state fair, although I had to carry you from ride to ride.
No matter how engrossed we got in the medical struggle, you were indefatigable when it came to fun.
To paraphrase Emily Dickinson, because we could not stop for joy, you kindly stopped instead.
You awed us with your spirit.
She sits at the kitchen table, watching me.
“What are you doing?”
“I’m reading a book.”
“What kind of book?”
“About Haiti.”
“Why are you using that yellow thing?”
“I’m marking what’s important.”
“Mister Mitch?”
“Hmm?”
“Next time we go to Haiti, can I stay there?”
“You’ll have to come back with me.”
“Why?”
“We still have to see the doctors. You’re still a little sick.”
I say it quickly, without thinking. I don’t realize this is the first time I have ever used the word sick with her.
“I’m not sick! I’m not sick!”
“OK.”
“I’m just having trouble walking!”
You
When we landed in Germany, you met a new companion.
A wheelchair.
You gripped the handles. “This is for me?” you asked. I had to look away. Morrie, toward the end, was confined to a wheelchair. My mother, after her stroke, was, too. My father pushed her around for a year, until a stroke felled him as well, and he joined her in the seated world, the two of them draped by giant wheels, needing wide berths for passage.
For a stretch, we attempted to keep up their normal activities, going to movies, rolling them into restaurants, relying on home health care workers to lift them in and out of cars. But the world slowed down. Only certain places would accommodate us. I watched my parents sometimes, slumped back in resignation, tired shadows of their once energized selves. I could not put you in a wheelchair, Chika, without a choking in my chest.
