There had been hints that something might be happening to Bobby Sliko. He’d started to blink a lot during his freshman year of high school. His mother took him to the family pediatrician; an eye test found nothing wrong. His handwriting became harder to read. Bobby had played soccer in the Laurel Boys and Girls Club league since childhood, but in his sophomore year he told his parents he wanted to drop out.
In May 2006, days after Bobby’s 16th birthday, he and his father were driving to school.
“You’ll be able to get your driver’s license now,” his father said.
“I don’t think I’m going to,” Bobby replied.
“Don’t you want to drive?”
“No. I don’t think I’d be a very good driver.”
Bob Sliko was surprised by his son’s answer. Every 16-year-old wants a driver’s license. But he knew Bobby to be thoughtful and reasoned that his son’s reluctance might stem from his unwillingness to assume the responsibility of driving.
Bobby had always been an outstanding student, but his grades were slipping at the academically demanding St. Vincent Pallotti High School in Laurel. A teacher told his parents that Bobby was still adjusting to an academic load that included honors classes in Spanish, literature, and history.
Other hints surfaced, yet no one suspected that for more than two years Bobby had been losing his sight.
He had first noticed his peripheral vision narrowing in eighth grade, but he thought it might be from playing too many video games, so he stopped doing that. One morning a few months later, he woke with what seemed to be a gossamerlike veil in front of his eyes. He blinked and rubbed his eyes, hoping it would go away, but it grew worse. Soon black curtains began closing off his peripheral vision.
Bobby kept his secret locked inside, never letting on that the reason he had quit soccer was because he had a hard time following the ball. He convinced himself that he didn’t want to worry his parents and that he hated the idea of wearing glasses. But deep down, Bobby harbored a fear that he might be going blind, and he was too scared to tell anyone.
By his junior year in the fall of 2006, Bobby’s vision was “like looking down a tunnel with a screen door in front of it,” he recalls. He could still discern colors, but clock faces were no longer decipherable. He’d been an avid reader from early childhood, finishing Harry Potter novels in a day. Now he could no longer read science fiction, history, or the Japanese samurai-warrior comic books he and his younger brother, Matt, loved.
Bobby did everything he could in school to compensate. He took care not to trip on stairs or bump into things when he walked the corridors of Pallotti. Sitting in the front row of classes so he could hear better and see things on the blackboard, he managed to maintain nearly a 3.8 grade-point average. He played baritone saxophone in the school band, leaning in until the sheet music was inches from his face. He had a hard time distinguishing people as they approached him in the hall, so he learned to identify them by their voices. Although shy, Bobby had a number of friends who prized him for his kindness and sense of humor.
“Bobby’s the one person I know who I’ve never heard curse or ever speak ill of anyone, even in a joking way,” says Andrew Townsend, a friend since seventh grade. “That’s rare in a competitive place like Pallotti.”
In a religion class sophomore year, recalls Bobby’s friend and fellow band member Mary Dzwonchyk, students were discussing the concept of heaven when one said, “If anyone’s going to heaven, it’s Bobby. If he doesn’t get in, then we’re all screwed.”
“Bobby’s sense of humor is unique,” Dzwonchyk says. “He’s always making up his own little jokes in Spanish, and he loves them.”
Bobby had begun studying Spanish in sixth grade and had developed a good accent and vocabulary. His Spanish teacher, Pat Evans, considered herself and Bobby to be “word nerds” because they always wanted to learn new ones.
Bobby enjoyed mining his Spanish vocabulary to dream up bizarre sentences to spring on his friends.
“Ayudame por favor—los monos volando estan robando mi queso!” he’d say.
Translation: “Help me, please—the flying monkeys are stealing my cheese.”
One day in the late fall of 2006, Bobby’s mother, Judy, a fifth-grade teacher in the Prince George’s County school system, popped her head into Bobby’s room to call him for dinner. She saw him quickly click the large, 72-point type on his computer back down to 14-point.
“We’ve got to get Bobby’s eyes checked,” Judy told her husband, Bob.
Bob agreed. He said he’d noticed that Bobby was having difficulty seeing his math assignments.
On Friday, December 15, Bob—an electrical engineer who works for Lockheed Martin at NASA’s Goddard Space Center—drove Bobby to see Sami Ghannam, an optometrist on Main Street in Laurel.
Ghannam, who did some of his training at the Wilmer Eye Institute at Johns Hopkins, put Bobby through a series of tests. Strong lenses only slightly improved his visual acuity, and Ghannam’s unease grew.
“I’m having some trouble with my peripheral vision,” Bobby confided before Ghannam asked him to fix his gaze on the knot of his tie.
Ghannam then held his hand off to the side and asked Bobby how many fingers he was holding up. Anyone with normal vision would be able to see them, but Bobby couldn’t. Ghannam moved his hands closer to Bobby’s line of sight.
“I still don’t see them,” Bobby said.
Bobby and his mother, Judy, go over his anatomy homework as the family relaxes in their living room. One of the family’s cats, Smokey, is next to Bobby; Misty relaxes on Bob’s lap. Matt keeps himself busy with his Game Boy.
Only when Ghannam moved his hand directly in front of Bobby’s face could he see the optometrist’s fingers.
Ghannam dilated Bobby’s eyes and looked into them with a slit-lamp microscope and a 90-diopter lens, but he detected no ocular pathology—no glaucoma, no impeded blood flow, nothing in the eye to account for vision loss. He hadn’t seen this before in his practice, but he recognized it as an almost textbook case. He asked Bobby to sit in his waiting room while he spoke with his father.
“I’m quite certain Bobby’s vision problem is neurological,” Ghannam told Bob. “It could be a mass or tumor of some kind. He needs to see a neurologist right away.”
Bob called Judy on his cell phone but could barely choke out any words.
Four days after Bobby’s visit to the optometrist, his pediatrician telephoned the Silko home with his MRI results. Judy answered. She called Bob, who drove home from work immediately. The two of them waited in the kitchen until Bobby got home from school. Bobby knew the news was bad the moment he walked in.
“What’s wrong, Mom?” he asked.
Judy and Bob wrapped their arms around their son and did the hardest thing they had ever done as parents. They told him he had a brain tumor.
Judy whispered, “We’ll all get through this together.”
When Dr. George Jallo examined Bobby’s MRI scan a couple of days later at Johns Hopkins, he saw a tumor bigger than a golf ball near the base of Bobby’s brain, compressing his optic nerve at the optic chiasm. The chiasm is where the optic nerves from the left and right eyes meet and cross before they traverse to the brain’s visual cortex, where vision is processed. The tumor was compromising blood flow to the optic nerve, shutting down Bobby’s peripheral vision because the neural fibers for peripheral vision are more sensitive than those for central vision.
The tumor also pressed against Bobby’s pituitary gland, the body’s master hormone gland, which is roughly the size and shape of a pea. This pressure interfered with the release of growth hormone and probably explained why Bobby wasn’t as tall as might be expected of the son of two tall parents. Jallo also noted that the tumor had begun to invade the brain’s third ventricle, a narrow cavity that provides a pathway for the circulation of cerebrospinal fluid.
Jallo suspected that Bobby had a craniopharyngioma, a tumor usually found in children. The tumor’s nascent cells likely had resided in Bobby’s brain since early development. Although the rare tumor is generally benign, Jallo knew that it could grow aggressively. He also knew that a tumor this big in so delicate an area would be hard to remove.
A graduate of George Washington University and the University of Virginia medical school, Jallo had come to Johns Hopkins in 2003 after training under the late pioneering pediatric neurosurgeon Fred Epstein at NYU and Beth Israel hospitals in New York City. Like his mentor, Jallo specialized in difficult tumors in and around the brain stem and spinal cord. Jallo had emigrated with his family to the United States from Lebanon in 1971. They had settled in New Jersey, where Jallo nearly failed the first, second, and third grades because he spoke only Aramaic, an ancient language known to few outside the Middle East. By fourth grade, Jallo spoke English well enough to succeed in school.
On the day after Christmas, Jallo—who had been recommended by Bobby’s pediatrician—met with Bobby and his family in his office. Judy’s parents, Margaret and Bob Bero, had driven from their home in Johnstown, Pennsylvania, to be there. Margaret, whom Bobby and his brother call Meme and everyone else calls Maggie, is a registered-nurse anesthetist; her husband is a retired high-school math teacher. They had researched Jallo’s qualifications to satisfy themselves that he was an outstanding doctor.
In Jallo’s office, Judy was on the verge of breaking down but held herself together for Bobby’s sake. She and Bob asked the question foremost on their minds: “Is it cancer?”
Jallo said he couldn’t be certain, but these types of tumors were usually benign.
They asked how he planned to treat it.
“Surgery is our only option,” he said.
He wanted to perform the surgery as soon as possible to save what he could of Bobby’s vision, but he warned that the surgery carried a risk of leaving Bobby blind in one eye or both.
“I’m going to do my best to save your sight,” he told Bobby.
Jallo rearranged his schedule to operate the next week.
On the drive home, Bobby and his parents and grandparents all agreed they’d been very impressed by Dr. Jallo. Bobby had visited his grandparents during the summers from the time he was a little boy. He loved and trusted his grandmother and, because of her medical training, looked to her for reassurance.
“Things are going to turn out all right, Bobby,” she said. “You’re at one of the best hospitals in the country, and you’re being treated by one of the very best doctors.”
Maggie had assisted on countless surgeries and knew what an ordeal this would be. She knew he was upbeat and resilient, and she also knew him as the little boy who wouldn’t kill bugs and who became inconsolable after he saw someone step on a caterpillar.
The extended family had often taken trips to Gettysburg, Hersheypark, and Ocean City. When Bobby was well again, they agreed, they’d take a family trip. Bobby said he’d like to visit Niagara Falls.
Since learning about Bobby’s tumor, Judy had reproached herself for not detecting Bobby’s vision problems earlier. She thought of the hours she and Bob had spent with their sons at family dinners, attending church, driving them back and forth to school, looking over their homework, watching TV.
How could I have missed this? she asked herself again and again.
Bob kept thinking back to the time Bobby told him he didn’t think he’d be a good driver. Both parents were consumed with guilt.
In bed that night, Bobby sensed his world unraveling. The word “tumor” scared him, and so did the impending brain surgery, but nothing frightened him as much as the thought of living his life in darkness.
“I’d like to have the anointing-of-the-sick sacrament,” Bobby told his parents the next day.
Bobby’s parents felt uneasy about the request—it’s a Catholic rite usually administered to the dying—but they took Bobby to St. Mary of the Mills Church, where he had been confirmed three years earlier. There, a priest administered the sacrament to give him strength, forgive him his sins, and prepare him to enter the next world in a state of grace.
The evening before Bobby’s surgery, Judy went upstairs to her bedroom, safely out of Bobby’s earshot. With Bob at her side, she wept until she had no tears left.
On the morning of the surgery, Judy and Bob went with Bobby into the operating room, walking on either side of his gurney and holding his hands. The announcements that morning at Pallotti high school included a prayer for Bobby.
Of the surgical options available, Jallo chose the least invasive, a transsphenoidal approach. Jallo would enter through Bobby’s nose and sinuses and drill into the sphenoidal bone to gain access to the base of his brain and the tumor. This approach meant Jallo could thread only small instruments up into the region of the tumor.
With an operating microscope to guide him and an endoscope lighting the way, Jallo snaked instruments into a cavelike space in Bobby’s lower brain. There he saw a gelatinous brown tumor through the operating microscope, which enlarged his field 10 to 20 times. He moved his scoop-shaped curette into position and began to scrape and peel away small pieces of the tumor from the optic nerve and pituitary gland. The tumor had hard white flecks on it from calcification that proved hard to remove.
As minutes turned to hours, Jallo continued to strip tumor tissue away piece by piece while keeping a safe distance from the left carotid artery, one of the two major arteries that supply blood to the brain.
The vision in Bobby’s right eye was already down to 20/200, the definition of legal blindness. Jallo knew Bobby’s optic nerve already had been so damaged by the tumor that it couldn’t absorb much more punishment. He didn’t want to risk removing more of the tumor than he safely could. When he finished peeling off all the tumor possible, he could see the optic nerve decompress as the pressure on it eased.
After nearly five hours in the OR, Jallo ended the operation. A postsurgery MRI revealed that he had removed nearly all of the tumor.
At about 5 pm, Jallo walked to the waiting area to talk with Bobby’s family.
“It went well,” he said. “I got almost all of the tumor out. By the look and feel of it, I’m certain it is benign.”
Judy and her mother hugged him.
Bobby woke up in the pediatric ICU sometime after midnight unable to breathe through his packed nose. The intravenous lines into both arms caused pain, and he became frightened. At his bedside, Judy and Bob became alarmed when the monitor showed his heartbeat increasing rapidly. They and the nurses gave him water to drink and consoled him, and Bobby calmed down. His parents stayed through the night and into the next morning, when Bobby became alert.
His friend Ryan Brophy had visited him after the surgery and pasted blue Pallotti football stickers around the room. From his bed, Bobby realized he could see them clearly enough to read the print. The TV came on, and he read the station-identification logos at the bottom of the screen, something he’d not been able to do. On a football sports clip, he could see the numbers on the players’ jerseys, and now he could see faces clearly—it no longer seemed as if he were looking through a screen door. Bobby looked to his left and right and discovered that the black curtains of his peripheral vision had opened wider.
Bobby and brother Matt play a video game called Rock Band that simulates an actual band. Matt has appeared in school productions including Seussical—based on stories by Dr. Seuss—in which he played the lead and sang.
“This is incredible,” he told his parents, grandparents, Dr. Jallo, and everyone else who came into his room. “It’s the best I’ve seen since the eighth grade.”
For the next four days in the ICU, nurses checked on Bobby hourly to make sure he remained conscious and oriented. At night they woke him, shined a light in his eyes, and asked him questions.
Bobby grew weary of the awakening and grilling. Late one night, a nurse came to his bedside.
“What is your name?”
“Where are you?”
“Johns Hopkins Hospital.”
“Who is with you?”
“The aliens are with me, and they’re taking me back to see Elvis.”
The nurse didn’t know what to make of that.
“I’m kidding,” Bobby laughed.
Another night, a nurse woke him and asked his name.
“Dr. Sigmund Freud,” he answered.
He watched a TV segment on monkeys trained to help disabled people and told his nurses he’d like to train a monkey—to be named Bobo—to hit the monitors with a hammer to stop the constant beeping.
Bobby and his brother, Matt, have different temperaments. Bobby is shy and contemplative while Matt is outgoing and impulsive. They’d had the usual sibling arguments, trading insults and picking fights with each other—Judy called these “their brother moments.”
They had shared a bedroom since they were little. When they became teenagers, Judy asked if they wanted separate rooms, but they said they wanted to stay together.
Three years younger than Bobby, Matt seemed not to want to know the details of his brother’s medical ordeal. He held back when he visited him in the hospital, but when he saw his brother surrounded by a bank of monitors and the IV lines going into his arm, the seriousness of his brother’s situation seemed to overwhelm him.
“I’m sorry for all the mean things I ever did to you,” Matt told him.
“Thanks, Matt,” Bobby said. “It means a lot.”
Five days after his surgery, Bobby went home. A week later, he returned to school.
Little more than a month after his sight had been restored by the tumor’s removal, Bobby woke one morning and looked around the bedroom to check his vision.
Something’s not right, he thought.
He stood, looked straight ahead, and stretched his hands out to his side. He couldn’t see his fingers. He moved them in closer, but they were still outside his field of vision.
He stared into the mirror. His face no longer appeared distinct. The gauzy haze that had disappeared after surgery had drifted back. He rubbed his eyes, but the fuzziness wouldn’t go away.
Bobby looked at his arms, still black and blue from needle punctures. He had never felt so keen a sense of defeat.
I just went through brain surgery, he thought. What’s happening?
He slowly walked to the kitchen to tell his parents.
When Dr. Jallo studied Bobby’s latest MRI scan, it looked as if he had never operated at all. A spherical, fluid-filled cyst as big as, if not bigger than, the original tumor now filled the space it had occupied. During the operation, Jallo had left a small cystlike portion of the tumor that pressed against Bobby’s optic nerve and pituitary gland and was too risky to remove. Jallo had warned the family of the possibility of regrowth, but it seemed remote. Cysts can remain dormant for years if not permanently. Bobby’s had grown with astonishing speed.
Jallo knew he had no choice but to go back into Bobby’s brain to remove as much of the cyst as he could. He also knew that once Bobby healed from the surgeries, he would need to undergo radiation therapy to kill the remaining cyst-forming cells.
Jallo explained his plan of attack to Bobby and his family.
Bobby said, “If that’s what we have to do to kill this thing, then let’s do it.”
Told that Bobby would be absent again, the Pallotti school offered a prayer for him with every morning announcement.
Jallo operated on Bobby again on March 8, about two months after the first surgery. He followed the same minimally invasive approach he’d taken the first time. Working up through Bobby’s nose and sinuses, he snipped and pulled out as much of the cyst as he could and drained the yellowish fluid that filled it. As he did so, Jallo could see the optic nerve reinflate as the pressure on it was alleviated. He checked and double-checked his work and finally was satisfied with what he saw.
This is it, he thought. It’s finished.
When Bobby woke up enough to look around the ICU, he realized that his sight had improved but wasn’t as sharp as it had been after the first surgery.
Not long after his release from the hospital, Bobby saw that his vision was worsening. In a matter of days, it grew dimmer, fuzzier, and narrower. In late March, about three weeks after the second surgery, a gray-colored dot loomed in the central vision of his right eye. In time, the dot expanded into a fuzzy-rimmed sphere large enough to block a big part of vision from his right eye.
An MRI revealed that the cyst, though somewhat smaller, again was pushing against the optic nerve and remained as threatening as it had been before. Jallo was stunned to realize he hadn’t been able to kill off or at least significantly reduce it. He’d never encountered anything like this before.
Jallo wanted Bobby to undergo radiation therapy, but he needed to wait until he had healed from the surgery.
In the meantime, Bobby tried to maintain as normal a life as he could. He continued to attend school, where his teachers made every accommodation possible. Now in the second semester of his junior year, he went regularly to the school’s learning center, where director Diane Kime and assistant Sheila Mudd read assignments and tests to him because his vision was so weakened that he couldn’t read normal-size print. When he had an essay to write, he would dictate it and Kime or Mudd would write it out for him. Kime sometimes stumbled when she tried to read trigonometry equations, and Bobby helped her through them.
At home, his parents spent evenings reading assignments to him. Bobby adapted to the new way of learning. Although he had always had to study hard for his grades, he continued to maintain nearly a 4.0 grade-point average.
Bobby had to listen carefully to understand questions and assignments read to him, and his hearing sharpened. At home he could hear his parents, certain they were out of earshot, whispering in another room.
“Better be careful,” he’d tell them. “I can hear everything you’re saying.”
Bobby knew his parents felt guilty even though he’d told them countless times they shouldn’t blame themselves for the fact that he’d kept his secret so well.
Once when he walked into a clinic to have his blood drawn, he stumbled. Helping him up, his mother couldn’t mask how bad she felt for him.
“Mom, I want you to stop worrying about me,” he told her. “One way or the other, I’m going to beat this thing.”
Bobby hadn’t fit in right away when he arrived at Pallotti his freshman year. Although happy to talk with anyone who approached him, he was too shy to strike up a conversation with someone he didn’t know. He had a small group of friends who had known him from St. Mary’s School, but he kept mostly to himself.
Now all the Pallotti students who knew Bobby and many who had never known him before wanted to help him. They monitored him in class and in the halls to make sure he didn’t fall or trip. A group Kime dubbed “Bobby’s brigade” always stood ready to usher him to and from his religion class in a building across the street.
When he missed a day or was in the hospital, members of his classes offered prayers for him. If teachers forgot, students reminded them.
“The students were not responding to Bobby’s disability,” Kime says. “They were responding to the kind of person he is.”
Bobby never wanted to appear diminished in front of his classmates, so he always tried to keep things light, dreaming up Spanish phrases—“The extraterrestrials have eaten the legs of my furniture.”
When his Spanish class planned a field trip to a nearby elementary school to read stories in Spanish to the youngsters, the teacher, Pat Evans—who felt that Bobby had a “third eye” that gave him a special sense of purpose—realized Bobby wanted to join his classmates even though he wouldn’t be able to participate. So she borrowed a digital camera and gave it to Bobby, saying, “We need someone to take pictures on the field trip.”
Bobby’s teachers never heard him complain, even when they could see the pain in his face. They called him the Energizer bunny because nothing seemed to get him down. When a headache was too painful to ignore, he would go to the principal’s office between classes to get aspirin or ibuprofen.
Student-activities director Patti Lutz heard him express regret only once. One day he said, “You know what I feel bad about?”
“What?” she replied.
“My mom keeps saying she wishes she could trade places with me, and I don’t want her to feel that way.”
Nothing changed Bobby’s school experience more than the portable closed-circuit television that arrived at the start of his senior year. It allowed him to read and write on his own and helped raise his already-high grades. Here, in his US-history class, he uses it to watch teacher Gerard Connolly write on the blackboard.
Lying on a table in a basement room of the Weinberg Building at Johns Hopkins, Bobby experienced a twinge of panic when a hot, pliable, meshlike plastic was applied to his forehead. He thought the skin on his face would be burned. The technicians applied a similar piece to Bobby’s nose and put another in his mouth, on which he bit down hard to make teeth impressions, and then another on the back of his head. The procedure took an hour, and when it was over Judy and her mother were shocked to see Bobby’s beet-red face.
The technicians fused the pieces, which then cooled and hardened to form a mask for Bobby to wear during his radiation treatments. When Bobby put on the mask, his grandmother told him he looked like the Phantom of the Opera.
He began six weeks of radiation treatments on April 9, one month after the second surgery. He timed his arrival at the radiology therapy center in the middle of every weekday afternoon so he’d miss only one of his classes.
In the radiation-therapy room, Bobby lay flat on an adjustable table affixed to the circular radiation-therapy device while technicians hooked the back of his mask to the table. They then placed the front part of the mask on his face and attached it to the back part, locking his head in place. Green beams of light showed the path and angle that the beams of radiation had to traverse to hit the cyst and avoid the healthy parts of Bobby’s brain. Each treatment took 12 to 15 minutes.
Bobby underwent a CT scan every week to make sure the radiation was hitting what it needed to hit. Each time his mother or father took him, he sang to the tune of Harry Belafonte’s “Day-O”: “Now I get the CT scan; / when it over, it’s time to go home.”
Bobby usually arrived early and waited with other patients in an alcove across from the radiation-therapy rooms. Despite the circumstances, the mood in the waiting area was seldom somber, and Bobby did his part to keep things light. When the state-of-the-art radiation-therapy device, which cost around $2 million, quit working one afternoon because of a computer glitch, Bobby said, “Let’s go in there and whack it with a hammer. That usually works.”
Telling his Spanish jokes about aliens and flying monkeys, he soon bonded with fellow patients and their families and began hugging people when he arrived and left each day. Serious illness has a way of stripping away pretense, and Bobby and the other patients—including a smiling teenage girl and two young fathers, all being treated for malignant brain tumors—shared their stories
“There are people facing a lot worse than I am,” Bobby told his mother on the drive home one afternoon. “I don’t feel I have any right to complain.”
The principal of Judy’s school had told her to take all the time off she needed for Bobby, so she drove him most days, but Bob’s boss was equally understanding and Bob did his share of driving. Judy’s parents drove down from Pennsylvania to be there many afternoons.
In the space of two days in the middle of his treatment, Bobby received good news and bad. On April 26, he was inducted into the National Honor Society at school; he had maintained a 3.79 GPA his junior year.
Two days later, as his vision weakened, an MRI revealed that his cyst had increased in size, apparently a result of the initial effects of the radiation. This caused it to press harder on his optic nerve. The oncologist explained that it normally takes months for radiation to eradicate a cyst.
About three weeks into the radiation therapy, Bobby became fatigued and sick to his stomach. At week four, he began losing circles of hair where the radiation beams were directed.
There was one event Bobby was determined not to miss: Pallotti’s junior prom on May 5 and the postprom party at Dave & Buster’s in North Bethesda. It was another of Bobby’s ways to let himself and everyone else know he was still Bobby.
After the prom, Bobby approached the long escalator at White Flint Mall to get to Dave & Buster’s. It was out of order, so he had to climb it step by step. The steps weren’t evenly spaced, and Bobby stumbled. He righted himself, took a couple of steps, and fell again, hard this time, cutting his arm. He stumbled a third time even as students went to help him. Bobby told them he was fine, but his resolve to maintain a happy façade in front of his friends was beginning to fray.
Bobby’s father was on the second floor when he saw the blood on Bobby’s arm and knee as his son climbed up the escalator. The school had asked that at least one of Bobby’s parents attend the postprom party, and both had come. Bob ran to get Judy, and together they hurried to find bandages.
Patti Lutz had seen Bobby’s stumbles and read the emotion welling up in his face. When he reached the top, she walked over to him, took his arm, and said, “Come with me, Bobby.”
Eighteen years earlier, Lutz had been diagnosed with a pituitary tumor and had undergone radiation therapy. She and Bobby had talked about their shared medical experiences, and although her vision had been spared, she understood some of what he was going through.
“One of the things I learned from my tumor,” Lutz says, “is that many feelings build up inside you, and you have to give yourself some time to be mad and even a little time to feel sorry for yourself, as long as you don’t let it control you.”
Lutz found an empty storage room at Dave & Buster’s. She ushered Bobby inside and then faced him.
“It’s not fair, is it, Bobby?” she asked.
Bobby had resisted feeling he’d been cheated, but he sometimes found himself thinking wistfully of his friends and all they could do. Being normal again seemed agonizingly unreachable. At first he was hesitant to answer, but Lutz prodded him: “Let it out, Bobby, let it out.”
“No,” he said softly, “it’s not fair.”
“Are you mad about it?”
“Yes, I’m mad.”
“You have every right to be mad about this, Bobby, and there’s a difference between feeling sorry for yourself and being mad.”
Bobby felt months of hurt and frustration boil up inside him. His lips quivered, and his eyes filled.
“It’s just you and me here, Bobby. Don’t hold it in.”
For the first time in his ordeal, Bobby broke down as Lutz held him.
Bobby’s parents had returned with bandages. When they saw Bobby and Lutz, they joined in the embrace.
When they had dried their eyes, Lutz stepped back and said, “Bobby, this is going to be a great night. Now it’s time to go have fun.”
Bobby felt as if a weight had been lifted. He joined his friends at the party, where they laughed and played until 5 in the morning, when buses took them back to the school.
Bobby’s radiation treatments—30 in all—ended on May 22. To celebrate, Judy and Bob brought in cakes for the radiology technicians and patients, and that evening the family ate at Phillips seafood restaurant in Baltimore’s Inner Harbor. They also took Bobby to the St. Jude’s Shrine in Baltimore for a blessing.
The next day, Pallotti held its annual honors assembly, at which top students are cited for excellence in various subjects. Bobby’s religion teacher, Sue Wiedel, selected him for the award, which she said honored not only his academic achievement but also his “faith, determination, and courage.”
Students usually responded politely when the winners were announced. But when principal Steve Edmonds announced that Bobby had won the religion award, the 140 students in the junior class stood and burst into applause and cheers, prompting students in the other classes to stand and clap.
Sitting in the bleachers with the other students, Bobby was surprised when his name was announced. He walked over to receive his gold pin and sat next to Wiedel at the front of the crowded gym. A few days before, Wiedel had told Bobby’s parents about the award on the condition that they not tell him. She now told Bobby they were in the audience.
“My mother’s crying, isn’t she?” Bobby asked.
“I don’t know where your mom is,” Wiedel said.
“She’ll be sitting next to a weird-looking kid who would be my brother.”
Wiedel looked out at the audience.
“Okay, I found her,” she said. “Yes, she’s crying.”
Bobby’s vision grew steadily worse. He became unnerved when it began to fluctuate—sharper one day than the next, sometimes changing in the course of a day. One day he could see faces clearly, the next they’d be a blur. One day his right eye was stronger, the next day his left.
Sometimes when he wrote a school paper on his home computer, his vision would deteriorate so quickly that he’d have to enlarge the type size halfway through. Judy contacted Dr. Jallo, who explained that the rapid changes were likely the result of the fluctuating pressures that the cyst exerted on Bobby’s optic nerve.
The ebb and flow of his vision meant Bobby constantly had to assess and adjust—he never knew what the next day, or even the next hour, would bring. Every morning, he looked in the mirror to check how well he could see, at least for the moment. He rolled his eyes to exercise them and rubbed them to see if that would help, but it didn’t.
Bobby and his friends discuss a problem from chemistry class. Marissa Parlock sits next to Bobby, and next to her is Mary Dzwonchyk. Both play in the band with him. Justin Donlan is on the left.
He took comfort in his family’s love and soothed himself by petting the family’s cats, Smokey and Misty, as he sat in a living-room chair. He tried to keep in mind what one of his teachers had told him: God won’t give you more than you can handle.
Gradually, the fluctuations grew less distinct and the gray spot in his central vision reemerged as a kind of fuzzy static. His vision declined to the lowest point it had ever been, and Bobby’s world became a twilight of shapes and shadows. He began walking into walls—and kicking them in frustration. One question now haunted him: Am I going blind?
In early June, Jallo didn’t like what he saw on an MRI. He knew it would take more time for the radiation therapy to show results, but he hoped it might have begun to make a dent by now. The MRI scan said otherwise. The cyst was as large as ever. Jallo knew Bobby needed another surgery.
Bobby’s parents asked Jallo if they could take a brief trip to Canada before the surgery, and he told them to go. Bobby, Matt, and their parents and grandparents traveled to the Canadian side of Niagara Falls, where Bobby rode the rapids in a speedboat and took a trip on Maid of the Mist, the boat that takes tourists close enough to the falls to feel the spray. Bobby loved it; so did everyone in his family. After three days, they returned home to face the reality of another operation.
Bobby was rolled into the operating room at Johns Hopkins on June 29. Rather than taking the transsphenoidal approach, Jallo this time made a small hole in Bobby’s skull. He then used the CT scanner and endoscope to guide him as he threaded a thin catheter through the top of Bobby’s skull downward to the cyst. He visualized part of the cyst on the microscope and worked the catheter toward it. He wanted to penetrate the cyst’s outer shell with the catheter to drain and deflate it. He made a two-inch cut in Bobby’s scalp and inserted a small reservoir to collect the cyst’s fluid over time. Then the radiation could do its work and destroy the cells that produced it, Jallo thought.
In early July, Bobby experienced a headache so intense that he threw up and couldn’t lift his head. Jallo told Judy if Bobby threw up again to bring him to the Hopkins emergency room. Bobby did, and his mother drove him to the ER, where Bob joined them. The MRI showed that the cyst was as big as ever. It wasn’t emptying because the catheter Jallo had inserted hadn’t penetrated the cyst.
Jallo felt as deflated as Bobby’s family. He said their only option was to keep trying—meaning yet another surgery.
On July 20, Bobby underwent his fourth brain procedure in seven months. Jallo took the same approach as the time before, going through the skull.
Once again, an MRI revealed that the catheter hadn’t penetrated the cyst. Another failure. Bobby’s family was beyond exasperation. Bobby was weary of feeling so sick for so long and of the seemingly countless needle sticks. But the far deeper fear was that this would never be resolved, that his vision would never get better and the cyst would never go away.
Bobby’s grandmother Maggie had traveled to Hopkins for all the surgeries. She knew they were pushing the odds—that every operation increased the risk of a potentially catastrophic infection. She began considering other options. She researched major hospitals in New York and Philadelphia and mentioned to Judy and Bob the possibility of taking Bobby to one of them.
Judy and Bob said no. They had developed trust in Jallo despite the failures. Judy had read the disappointment in Jallo’s face when the last two procedures had failed, and she knew Bobby had become more than a case to him. The surgeon had developed an affection for him that melted his professional distance. She knew he cared about Bobby, and she wanted to stick with him.
Jallo rarely talked about his cases with his wife, but he talked about Bobby’s because it ate at him. He’d brought Bobby’s case up many times at the pediatric neuro-oncology conference held Tuesday mornings at 7:30. The meeting was regularly attended by oncologists, radiologists, and other specialists, who reviewed the most difficult cases in detail.
The conference doctors offered no new answers as to why Bobby’s cyst had defied Jallo’s attempts to drain it. They agreed that it was one of the most difficult and puzzling cases they’d encountered. Only Dr. Ben Carson, a pediatric neurosurgeon in Jallo’s surgical group, recalled a similar case of a hard-to-eliminate cyst. His fellow experts assured Jallo he was doing the right things and agreed he had only one option—try again to drain the cyst and await the full impact of the radiation. If he couldn’t drain it with the minimally invasive approaches, they recommended that he take a more radical one.
Jallo met with Bobby and his parents on August 1 and told them the time had come to be more aggressive.
Bobby, now very close to blindness, listened to Jallo and said, “I only hope this will be the last operation.”
Jallo said, “It will be.”
Bobby’s fifth surgery began around 8 in the evening on August 3. This time, Jallo performed what he considered the procedure of last resort, a craniotomy that opened Bobby’s skull and exposed his brain. Potential complications included infection, stroke, and blindness.
Jallo made a cut in Bobby’s skull along the frontal area down to the midear and removed a chunk of his skull near his temple to gain a clear view of his brain. Using a retractor, he gently lifted the frontal lobe of Bobby’s brain up about two to three centimeters. If this maneuver went wrong, it could constrict a blood vessel and trigger a stroke. With the brain elevated, Jallo saw directly for the first time the spherical brown membrane that encapsulated the cyst. He knew it would be too risky to tie off the cyst and remove it because it pressed directly against the optic nerve.
With the operating microscope to guide him, Jallo moved the thin catheter into place to insert it into the cyst. It wouldn’t go in. When it didn’t, Jallo understood why the previous procedures had failed—the membrane that formed its outer shell was simply too tough.
Jallo cut an opening in the shell with surgical scissors, and a brownish fluid seeped out. Jallo slid the catheter through the opening into the cyst, and it began to drain into the small reservoir Jallo had inserted under Bobby’s scalp two surgeries before. As the cyst drained and deflated, Jallo could see it pull away from the optic nerve, creating enough space for the optic nerve to reexpand. Lifting the brain and inserting the catheter had taken about 50 minutes, and it had gone well. Jallo’s only regret was that he hadn’t taken this approach sooner.
When Bobby opened his eyes, he knew instantly that his vision was better—not as clear as after the first operation, but better. Much of the darkness had lifted.
When Bobby returned to school for his senior year in September, friends who hadn’t seen him all summer were shocked at his appearance. His face was bloated and puffy from steroids he’d been taking to reduce tissue swelling. The steroids also had caused him to gain weight. His complexion was pale, small patches of hair were missing, and his arms were scarred and discolored from IVs.
Bobby continued his academic load, taking Catholic ethics and morality, precalculus, anatomy, history, British literature, and band. His Spanish teacher knew he wanted to take Spanish IV, which would be very visual and require a lot of reading. She thought it might be hard for him to keep up in class, so she offered to let him do independent study for credit. Bobby jumped at the chance, and they began meeting twice a week.
A major help for Bobby was a portable closed-circuit television that magnified print, a machine Pallotti had acquired on loan from the Prince George’s County Department of Education. Bobby also had a stationary closed-circuit TV at home. At Pallotti, students helped him wheel a mobile unit from class to class.
The CCTV meant teachers no longer had to read tests to him; the unit at home allowed him to read his assignments. The one at school came equipped with a camera that Bobby aimed at the blackboard to make it readable. With the aid of both devices—and the school making accommodations to help him—Bobby earned straight A’s the first semester. He was elected senior-class treasurer.
Pallotti’s homecoming dance on Friday, October 5, was one of the school’s two big dances each year; the other was the junior prom. In September, every class nominated candidates for the homecoming court. Once the eight members of the court were named, the entire student body cast ballots for homecoming king and queen, who would be announced at the dance.
Bobby knew he had friends and enjoyed the help and support of many students, but he was surprised to learn he’d been nominated to the homecoming court, especially after missing so many weeks of school.
He wore his best suit and tie to the dance. The girls wore pretty dresses. The gymnasium was decorated with streamers and balloons, and a DJ played CDs.
The names of the king and queen were a secret tightly held by Patti Lutz. One of the nominees for queen, Kim Banocy, had been a friend of Bobby’s since sixth grade, and they’d both played in the band. The announcement of the king and queen would be made at 11:30 pm. Kim told herself and her friends that she didn’t care if she won, but she hoped Bobby would.
At 11:30, members of the royal court were escorted into the gym. Then the music stopped, and Lutz announced that Kim had been selected queen and paused for a moment. Then she announced that Bobby had been elected king. As principal Steve Edmonds placed crowns on Kim’s and Bobby’s heads and shook their hands, the crowd of more than 300 erupted into cheers.
Students in the bleachers jumped up and down, generating a rhythmic clamor as they chanted: Bob-ee! Bob-ee! Bob-ee! The emotion of the moment seemed to fill the gym.
Teachers and students turned misty-eyed. No one could remember anything like this at Pallotti. Edmonds said the emotion in the room made it feel as if the school had just won the state basketball championship.
Patti Lutz had run into Bobby’s parents at a football game and told them the results of the student vote but made them promise to tell no one. She invited them to the dance but asked them to come in quietly so they wouldn’t give anything away.
Kim Banocy looked over and saw Judy and Bob standing together. Tears streamed down Judy’s face—and Bob’s. Bobby’s friend and fellow band member Mary Dzwonchyk went over to hug them, then went to hug Bobby.
Bobby—the boy who never sought to draw attention to himself—had become the center of a celebration he found hard to comprehend. Students came over to shake his hand. He beamed and thanked them, but it all seemed like a dream. When the cheering quieted enough for the music to start, Kim and Bobby took center stage and danced to “A Moment Like This.”
“I’m so glad you won, Bobby,” Kim said. “Everyone is so happy for you.”
“I’m glad you won, too,” Bobby replied, “but I really can’t believe this is happening.”
At school Monday, Bobby visited Patti Lutz. She asked if he’d recovered from Friday night. With a deadpan expression he said in Spanish, “I’m so excited I think my toes are on fire.”
“I see you haven’t lost your sense of humor,” she said. They both laughed. The outpouring of affection had lifted Bobby higher than he’d been in a long time.
Bobby returned to Hopkins every ten days or so through the fall to have the reservoir under his scalp drained. The size of a quarter and two or three times as thick, the reservoir collected fluid that drained from the cyst. Bobby always closed his eyes during the draining procedure. When it ended, he’d open them and see the world more clearly as pressure on the optic nerve eased. It was always a pleasant surprise. Invariably, though, the cyst filled with more fluid and his eyesight dimmed until the next draining. An MRI in early October showed that the cyst was slightly smaller but was still pressing on the optic nerve.
The draining procedure often caused bad headaches due to the changing pressures within Bobby’s brain. He also suffered sinus infections and fatigue. Sometimes he went to Sue Wiedel’s office to lie down on her sofa.
But for the first time in nearly a year, he felt as if his long ordeal might be nearing the beginning of the end. His sight had improved enough for him to play computer games for the first time in many months.
On December 6—11 months after his first surgery—Bobby underwent an MRI in Silver Spring. His mother estimated it was his 20th in a year, and it would be one of the most important because it would determine, she said, “whether we have a good Christmas or a bad one.”
The Hopkins doctors had noted during Bobby’s recent visits a steady decrease in the amount of fluid drained from his cyst. When they first began draining it after his August surgery, they drew out ten cubic centimeters every ten days or so. That had gradually dropped off. The last time they drained it, there had been virtually no fluid at all.
This meant one of three things, two of them bad: The catheter draining the cyst had dislodged, it had plugged, or it had finally caused the cyst to collapse. They would learn the answer the afternoon of December 11 when Bobby and his mother saw Jallo in his office.
“I hope you have good news for me,” Judy said as they entered the office.
Jallo had studied Bobby’s MRI and offered a smile. “I do have good news,” he said. “The cyst is gone.”
He showed them the MRI. “That’s where the cyst was,” he said, pointing to an area of Bobby’s brain. “Now it’s no longer there.”
Bobby beamed. Judy couldn’t contain her excitement.
Jallo said the delayed effect of the radiation had finally done its job and eradicated the cyst and all the cells that kept producing it.
“It’s not going to come back this time,” Jallo promised.
As soon as he got to the car, Bobby called has father to give him the news. Then he called his grandparents. “The cyst is dead,” he said, then launched into song: “Ding, dong, the cyst is dead—the big, bad cyst is dead!” He called his aunts and uncles and friends to sing the same song.
The following night, Pallotti held a Christmas concert in the gym. Band director Niko Iampiere had asked Bobby to play a brief solo on his baritone sax. Bobby’s parents and grandparents attended.
During intermission, principal Edmonds spoke briefly about Bobby’s medical problems, then announced that they had just received news of their own “Christmas blessing.”
“We’ve learned that Bobby Sliko’s latest MRI came back clean,” he said. The audience and 50-piece band—dressed in white shirts, black slacks, and bow ties—broke into applause.
Bobby had memorized his piece because he couldn’t read the music. He was nervous but stood and played a passage from “Silent Night” without missing a note.
The family spent Christmas at Judy’s parents’ house in Pennsylvania. It was one of the best ever for Bobby, who knew the worst was finally behind him.
In March of this year, he was inducted into the Spanish honor society at school. His brother, Matt, now a freshman at Pallotti, had earned a 3.89 GPA. Bobby told him he was proud of him.
Bobby couldn’t see well enough to take the SAT, so Pallotti guidance director Renee Duckworth read the entire test to him; it took seven hours. In March, Bobby learned he’d been accepted at the University of Maryland, Baltimore County. He and his parents agreed that the bigger College Park campus would be too daunting for him, at least for the first year or two.
Bobby is scheduled to graduate with his class on May 22 at the National Shrine of the Immaculate Conception in the District.
Although Bobby’s vision has improved since his cyst was declared dead, the assaults on his optic nerve caused permanent damage. A visit with a neuro-ophthalmologist early this year showed that Bobby could see the large “E” on the eye chart from 20 feet, the best his vision had been in some time. The vision in his left eye remains poor, as does his peripheral vision. But his central vision has improved slightly in both eyes. Although he can see well enough to walk around and not bump into things and he reads and writes well using his CCTV, his eyesight remains limited.
Jallo hopes for more improvement, but neural tissue is the slowest in the body to regenerate. He thinks it unlikely the Bobby will regain enough eyesight to drive a car, and because his vision problem is neurological and not in the eye, glasses don’t help.
Bobby remains unsure what his vision will allow him to do, but he’s making plans for his future in college and after. He’s considering a career in psychology or some other path that allows him to serve others. He wants to marry and have a family. His ordeal, he says, has given him a keener appreciation of things he once took for granted—a sunny day, laughter, the love of friends and family.
Bobby not only learned some of life’s lessons; he taught them as well. As Sue Wiedel puts it, “All the time we were trying to help Bobby, he was helping and teaching us, but he never knew it because he taught us with his example, his courage and forbearance, and he did it with such grace.
“We all gained far more than we gave to Bobby. His struggles helped everyone in this school learn about themselves and what is important in life.”
To see more photographs of Bobby Sliko and his classmates and family, click here.