What Do You See?
9:00AM, Wednesday, April 27, 1999
“What do you see, Kevin?”
“A bootday cake,” my strawberry blonde, blue-eyed, ants-in-his-pants son responds excitedly, clapping his hands at the memory of blowing out his two candles last month.
“What do you see, now?”
“A horsey!” he exclaims, bouncing in the chair while slapping his arms against the giant armrests.
Dr. Zaparackas, renowned Northwestern ophthalmologist, gently removes the guard over Kevin’s left eye and covers his right. “What do you see now?”
Kevin squirms in the ill-fitting examination seat. Wriggling and struggling to tear off the eye patch, his little hands are no match for Dr. Z’s long, female fingers as she holds the cover in place. Lost and restless, my spitfire toddler tries to climb to the freedom of the floor below – free from darkness.
Dr. Z persists, “What do you see, Kevin?”
With queasy stomach and shifting bowels, I clutch my clammy hands in silent prayer. Come on, Kevin; it’s a puppy! Just say it. Puppy.
The doctor carefully examines each of Kevin’s eyes with a baseball-sized magnifying glass and laser light.
Looking up from Kevin’s cherub face, she states firmly, “It’s not a cataract, Mrs. Scannell. It’s a tumor,” her kind eyes searching mine for acknowledgement. “Kevin has lost all vision in his left eye.”
Frozen, thoughts stuck in sludge, I wordlessly rationalize, You’re mistaken. We’ve been here five minutes. The doctor in Chesterton said it was a cataract. Simple surgery. Remove the cataract. No big deal. A tumor? What do you mean a tumor? Kevin scampers down via the footrest and bee-lines for the office counter where an assortment of wind-up Disney characters stand ready for action. Completed engrossed, Kevin gleefully cheers as Goofy and Daisy roll across the laminate. I watch as his right eye tracks their movements, his left lifeless and still. In the past month, Kevin’s left eye had begun to wander, and both our pediatrician and our optometrist neighbor had reassured my husband Tim and me that our son was fine. Lots of children have a wandering eye that eventually lines up. Kevin is just a clumsy, busy, boisterous toddler.
“We’ll get confirmation from Dr. Schroeder – he’s one of the world’s best retina specialists, and he’s here at Northwestern. This is one of the few pediatric ophthalmological emergencies, and I’ll get us in today as his first appointment after lunch. For now, go get something to eat, and I’ll meet you at the hospital at 2:00pm. He’s in the Galter Pavilion across the street, 5th floor,” Dr. Z casually directs me as if my car engine needs tuning.
Something to eat? Retina specialist? What’s happening? Today? This doctor will see us today and you’re coming with? I just met you.
“After Dr. Schroeder confirms the retinoblastoma diagnosis, we’ll schedule a CAT scan for tomorrow at Children’s Memorial. We want to make sure it’s unilateral retinoblastoma, not bilateral.”
“Yes, one eye. We don’t want bilateral – then we’d have to worry about vision. With unilateral, we’ll just enucleate, and Kevin will be fine. Nothing to worry about. He’ll never be a fighter pilot, but other than that, he’ll live a full life. Cured. ”
What are you talking about? “Enucleate?” Dr. Z’s hakuna matata attitude is wearing on me as I struggle to understand.
“Yes, we’ll remove the eye. It’s the surefire way to ensure that the cancer doesn’t go to the brain.”
“Yes, the tumor is cancer.”
I feel weak. I can’t grasp it. I want to talk to Tim, but he’s in San Francisco on business, and he won’t be back until Friday. Ever since I saw the milky blob in Kevin’s eye, I have been cold and confused. A methodical thinker, I ruminate through things carefully. My friend Susie and my mother-in-law Mary ask the doctors some questions, but I can’t process them. This is too fast. Dr. Z, please slow down. Then I can figure out what to do.
Two days before, Kevin had joyfully grasped the side of his crib and nearly leapt over the railing as I retrieved him from his nap. Smacking my cheek with a classic Kevin smooch, my exuberant youngest child looked me in the eye, grabbed my face with his chubby hands, and kissed me on the lips. Then I saw it, a strange glow in his left pupil. I turned him toward the window to get a better view and thought of the other children, Katie, Bethy, Brendan, and Brigid. Never had I seen such a reflection off of the mini-blind. When I looked again at Kevin, both pupils were perfect black disks. How weird. And that was it. I escaped from my fear and prepared for the older kids to come home from school.
Later that afternoon, my sister called to chat, and I whimsically told her about Kevin’s eye. “I saw the strangest thing today when I was lifting Kevin out of his crib. His eyes are so fair that one of them reflected the light from the blind.”
“That doesn’t sound right.”
“Oh, Kevin’s fine. He’s sitting right here on the kitchen floor with me, and his eyes are as bright as ever.” Kevin yanked another stack of Tupperware out of the kitchen drawer.
“I don’t know. It doesn’t make sense to me,” Sis said as I tried to dismiss her concerned tone.
Please. He’s fine. I asked, “How’s work?”
After supper, Sis called again. “Listen, Nancy, I just hung up with a fellow school parent who’s an eye specialist; I called him about Kevin. He said it could be nothing, but it could be something. He said Kevin needs to be seen as soon as possible.”
That started everything. Less than two days later, and here Dr. Z is saying it is “something.”
I hung up the phone, called Tim on his cell, got his voicemail and told him about Kevin, “Tim, I saw a weird thing in Kevin’s eye, and my sister says Kevin needs to be seen as soon as possible. She checked with doctor friend, and she’s pretty adamant. I’m sure he’s fine. I hope all goes well at your meeting. Love you.” Tim called back, and we were happy to connect. Later, I called Tim again and left another message saying we were going to meet with a local optometrist the next day. “The doctor is a friend of Susie’s. She got us in.”
Laser lights scan Kevin’s eyes. The Indiana doctor announces, “It’s a cataract, and Kevin has temporarily lost sight in his left eye. It’s imperative that he have the cataract removed surgically as soon as possible; otherwise, he will permanently be blind in that eye.” Stoically, I take the slip of paper with another physician’s name and office location at Riley’s Children’s Hospital with an appointment for the next morning. How do these people get these doctors’ appointments so fast? Thank you, God. Thank you, Sis. Thank you, Susie. I don’t know Indy. Tim does. Who’s going to take care of Katie, Bethy, Brendan, and Brigid while I get Kevin to Indy? I call my mom.
“I’ll be there by 7:00AM tomorrow, Nancy. No problem,” my seventy-year-old, nervous -wreck driver mother says with conviction. Thank you, God, for Mom. The drive is hell for her.
Next, I call Tim and leave a message about Kevin’s cataract. “I’m taking him to a specialist in Indy tomorrow morning. It would be great if you could come home. Love you.” He calls and leaves a message saying he has a crucial business meeting on Wednesday, and he’ll try to get home by Thursday.
Next, I call my genius nurse friend Carol.
“Cataract, cataract. My parents have friends whose granddaughter had a cataract,” calculated Carol whose mind works like a medical encyclopedia with hyperlinks to relevant cases. “They could fly their granddaughter on their private jet anywhere in the world, and they saw a doctor in Chicago.”
Miraculous, mysterious calls were made, and Goofy is now racing Donald to the Kleenex box in Dr. Zaparackas’ office on Huron Street as Susie and my mother-in-law Mary sit in quiet support.
“Really, get something to eat. I recommend the eatery at Niemen Marcus. They have a wonderful salad.”
Are you out of your mind? Who cares about food? “Okay. I’ll meet you at 2:00pm. Thanks so much, Doctor.” Lifting Kevin, I cling to him and gently touch his beautiful fair cheeks and rosebud pink lips. He grasps my neck, squeezes, and kisses me on the ear. My legs nearly dissolve under the weight of his exuberance. He has no idea.
Kevin pushes the button on the elevator. Go ahead, Kevin, you push all the buttons you want. We have four hours to wait until our meeting with Dr. Schroeder at Northwestern Memorial, and fingers shaking, I dial Tim’s cell.
“Hello, this is Tim Scannell. Today is Wednesday, April 29th, and I am not able to come to my phone right now. Please leave a message, and I’ll return your call as soon as I can.” Why is your voicemail message so long?
“Tim, Dr. Z said that it’s not a cataract – it’s cancer, and she said it’s one of the few pediatric emergencies. We’re going to see another specialist at Northwestern at 2:00pm. I’ll call you as soon as I know more. I love you.”
Dr. Schroeder confirms the retinoblastoma diagnosis, and Dr. Z schedules the promised CAT scan for the next day.
“Doctor,” I asked, “What are we hoping to find in the CAT Scan. What should I pray for?” Tell me what I can do! What is my job?
“One eye. Pray that it’s only in one eye.”
Blessed with a mission, I find solace. Please, Lord, let it be only one eye. Please, Lord, let it be only one eye. I drive home reigning on the heavens on behalf of my son. I pull into our Valparaiso driveway, and Tim’s car is in the garage. Why is Tim’s car here?
Katie and Bethy, adorned in their best dresses, bolt to the driveway. “Mom, you have to hurry! The sports banquet starts at 6:00! We’re going to be late!” Shit. I forgot about that. I had coached their volleyball teams, and the annual Saint Paul Sports Banquet is a big deal. I hug them and dart in the house with Kevin. Tim looks up from the couch, and we cannot speak. No words come out. Kevin plunges out my arms and lunges for his father.
“Tim’s home!” he beams and showers Tim’s face with kisses. Where did this child come from? My eyes well up.
“Dad came home early!” Brigid, free-spirited and five, races to hug me. The other children call their father “Dad.” Why doesn’t Kevin?
“I had to …,” Tim stops, emotion wrenching his face.
You’re home. We’re going to be okay. My mother hugs me, “Don’t go to the banquet, Nancy. It doesn’t matter. Stay home.” Katie and Bethy wait at the door.
Fighting tears, I hug Tim as he clings to Kevin, and swiftly say goodbye to my mom, Brendan and Brigid. How did Tim get home so fast?
That morning, Tim takes his seat at an enormous conference table, 8:00AM Pacific time. His phone buzzes, and as he looks around at the potential clients still milling around the coffee urn and bran muffins, he ignores the call. Prepared and primed for his presentation, Tim opens his laptop when his phone goes off again. Taking a risk, he ducks behind the lid of his briefcase, presses the voicemail button and listens to my message. Frantic and terrified, he bursts into tears, races from the room, bounds onto the elevator, runs to the hotel, and hails a cab to the airport. On the way, he calls the client, apologizes for his outburst, and explains that there was an emergency at home. Completely agitated by an airport ticket agent’s inability to grasp Tim’s urgency to catch the next flight to Chicago, he is nearly arrested for his belligerence. He begs, choking back tears in explanation, and is allowed to sprint to the gate.
I’m so sorry. Angst grips me as Tim tells the story. Voicemail had become our mode of communication, and I resolve to be thoughtful and intentional. We are not going to let this destroy us. God,help me to think clearly. God, please help Kevin.
That night, on autopilot, I move through the buffet line at Saint Paul’s. “Great year, Nancy.” What year?
“Oh, yeah, it was a fun season. The girls are great,” I mutter.
The Athletic Director announces, “And now the 5th and 6th grade volleyball teams will come forward.” I read off my prepared list of accolades for each player while distributing hand-made certificates.
Quivering, I end my brief speech, “Today, the mascot of the volleyball teams was diagnosed with retinoblastoma. Doctors in Chicago said Kevin has cancer of the eye. Please, please, pray that it is only one eye.” I held up my index finger, “One eye, please.” I am overwhelmed by the outpouring of faith in action. I silently reflect, “Where two or more are gathered, there I am in the midst of them.”
The next day, Tim and I drive Kevin to Children’s Memorial Hospital for the CAT Scan, and as Kevin’s tiny veins drink in the IV, he is strapped to the table. I pray silently. Our Father, who art in Heaven, hallowed be thy name. Please God, let it be one eye.
On Friday, Dr. Z calls to say the retinoblastoma is unilateral, and she schedules the surgery for Tuesday at 6:00AM . Family, friends, neighbors, Chicago parishes, Saint Paul’s, seemingly every soul we know showers us with prayers, cards, toys, books, stuffed animals, meals, and love. The phone rings and rings, and my mom calmly answers each call with kindness. Our faith strengthens with each devotional enrollment, mass card, and promise of prayer. “Tim, the Franciscans are praying for Kevin, and the children at Misericordia, and a monastery in New York, Dominican nuns. Here’s a rosary with holy water from Our Lady of Knock. It is unbelievable. There’s no way Kevin won’t get through this.” Thank you, thank you.
On Monday night, Saint Paul Parish hosts a Rosary service on Kevin’s behalf while Tim and I take Kevin to Chicago. Kevin’s smile beams from the car eat as the eerie creamy pupil lurks back at me. Hail Mary, full of Grace, the Lord is with thee. I hear the murmurs from St. Paul’s. I really do.
“Tim, Kevin is going to be fine. Everybody we know is praying for Kevin.” In affirmation, Tim’s right hand rests on my arm.
Tuesday morning, nurses gently administer anesthesia to Kevin as Tim holds our baby in his arms, stroking his beautiful pale face and gorgeous light red hair. “Where’s Doggy?” Kevin asks.
I realize that we don’t have Kevin’s favorite stuffed animal. Kevin’s rosy lips go slack as he drifts into a blissful dose. Tim caresses his forehead, and Kevin murmurs, “Thank you, Timmm.” We sit as a threesome, huddled in hope, and when they take Kevin away, I search our bags for Kevin’s single request – Doggy.
“We must have left Doggy at the hotel. I’m going to run back for him,” I stand ready to go. “It’s only a couple of miles, and I’ll cut along the lakefront.” Rhythmic steps keep time with my mantra. Please, please. Thank you, thank you. Fellow runners pass as I jog clad in jeans, polo, and Children’s Memorial nametag; Doggy is tucked safely in the crook of my arm like a football. Our Father, who art in heaven.
Four hours later, Kevin is brought to us in a miniature wheelchair. Drowsy and wrapped in a toddler’s hospital gown, he is an angel. The left side of his face is covered in a bandage from the top of his forehead to his mouth. He is so soft, so sweet. What does he look like underneath the patch? I place his stuffed treasure into his arms.
Escorted by a sweet nurse, we consult with the oncologist, “The cancer had traveled through the optic nerve on the way to Kevin’s brain, but we were able to remove all of the cancer to the point of transection.” Thank God. Is it still on the way to the brain? Point of transection?
Sensing the uncertainty, the doctor states, “In other words, we got it all.”
Gripped in gratefulness, we embrace and kiss Kevin. We try to respond. “Thank you, Doctor,” Tim stammers. Eyes dripping, I am speechless.
That beautiful early May evening, I sit on the front porch and watch as Kevin races up and down the sidewalk on his big wheel, his huge grin oblivious of the mitten-sized patch covering the left side of his face. He is simply Kevin, robust, energetic, curious, and full of life. I marvel and accept. Thank you, God. You are in charge. Kevin flashes me a smile. I’ll remember that, God, every time I look Kevin in the eye.
13 November 2013
Kevin will be seventeen in less than four months. He doesn’t think twice about his “fake eye” although when he was four, he said to me, “Mom, we gotta trow dis eye in da gahbij. It don’t work.” While in first grade, he dropped his eye in the toilet at Saint Paul’s, and Tim and I received panicky calls from the school principal about what to do. Kevin nonchalantly told the office staff, “Dere’s a spare eye in da yaundry room.” He has become famous as the kid at school who can take his eye out, and he loves to do it as an ice breaker. When he was ten, while at a senior citizen event, he got up to go to the buffet, casually placed his prosthesis on the table, and said to his friend’s grandfather, “I’m keeping my eye on you, Mister.” When he was twelve, we forbade him from going trick or treating on Halloween as a monster – without his prosthesis. He bumps into people on the left, and he spills a lot of coffee. He drives a car, and he has already dented the left side of the sedan. We consider the car christened. Kevin makes life interesting as he ponders sketches of new eye designs – an anime character, a peace sign? He’s happy, healthy, and artistic, and he fills our lives with joy and gratitude. I feel it every time I look him in the eye.