Galveston, May 18, 2008
He stands at the lip of the bowl, which looks like a giant, empty swimming pool, and gazes at the brand-new concrete. He plops down his skateboard and sets his left foot on top of it, rolling it back and forth a few times near the edge. Except for his blue jeans, he’s wearing all black—shoes, T-shirt, cap—and looks like any other skinny ten-year-old, except for the hospital band on his right wrist.
The skate park isn’t officially open yet, but his mom has a friend with the city who gave them special permission to get in this Sunday morning. Today he has one goal: to drop in, skate over to the other side, and return, building speed so he can zoom up the side of the bowl, power his board over the edge, slam the front wheels on the concrete, turn, pivot on the back wheels, and cruise back down. It’s a trick called a rock and roll, and he’s never done it in a bowl. Other kids will have all summer to learn how to do it. Johnny Romano, the youngest professional skater in the world, has 45 minutes. This is his last chance.
Johnny Romano first climbed onto a skateboard when he was two years old. It was 2000, and Johnny and his four-year-old brother, Joey, found their dad’s old board in the garage. Joey lay on it as if he were a surfer paddling out to catch a wave. Johnny stood on it as if he were a skater—and didn’t fall off. Their father smiled. Mike Romano had grown up in Houston, skating every day on the half-pipe in his yard; he spent summers in Galveston, where he surfed the waves and rolled down the seawall. Mike had been serious enough about skating that he’d gone to California once and competed in a contest with Tony Hawk, who would one day become the most famous skateboarder of all time. But he had left the sport far behind when he met Julie Batten while both were working at the Southwest Airlines ticket counter at Hobby Airport. They married in 1993 and settled down, first in Phoenix, then Dallas, and eventually Houston.
Mike built his little skaters a huge half-pipe in their north Houston backyard—24 feet long, 16 feet wide, and 4 feet tall. He would pad up the boys’ knees and put helmets on their heads. Johnny was like all kids at first, legs straight, body stiff, nervous. But he skated for hours, rolling back and forth, up and down the wooden slopes, and learned to bend his knees, lean his shoulders forward, and use his arms for balance. He wasn’t a daredevil; he was cautious and methodical, afraid of getting hurt. Mike had to nail a hockey stick onto the ramp a foot off the bottom so Johnny would have a makeshift ledge to drop in from. Then Mike moved it up six inches and Johnny dropped in from there. Eventually he worked his way to the top.
The Romanos—including daughter Sophie, who was born in 2002—took regular trips to Galveston, where they had family and friends, and Mike would take his boys out on the waves. Johnny loved the water (he wore his swimsuit all the time) and stood on his first surfboard at three. He was a remarkably good-looking child. “Joey is handsome,” his mother would say, “but Johnny is pretty—Ashton Kutcher pretty.” Johnny was a natural athlete and free spirit, always moving. His dad and brother would be inside playing a Tony Hawk video game and Johnny would be out on the half-pipe skating. He’d ask them, “Why play a skateboard video game when we can just go outside and skate?”
So it was obvious to Mike and Julie in early May 2005 that something was wrong. The seven-year-old boy who usually leaped out of bed in the morning now slept in. He was lethargic and pale and complained that his gums hurt. Three trips to the dentist solved nothing. On May 26 Johnny was riding his board in the driveway when he had to stop; he told his parents he was dizzy. “I felt wobbly at school today,” he added. They took him to a doctor, who drew blood and told them to go immediately to Texas Children’s Hospital. Johnny had acute lymphoblastic leukemia, or ALL, the most common form of childhood cancer. If untreated, he would probably die in weeks.
It’s only ten a.m. but it’s already hot, that sticky Galveston hot. Johnny’s not alone at the park. His best friend, Heath, a seventeen-year-old local skating legend, is there too, and so are Joey, Sophie, their grandmother and aunt, and other friends and family. Of course Mike and Julie are there. Mike brings his board. He has close-cropped hair, a holdover from two years ago when he shaved his head in solidarity with Johnny. The two share the same toothy grin. Julie is pretty and tall, with dark hair. She is methodical and driven; although she has never skated a day in her life, she understands her son better than anyone.
Johnny’s cancer had struck him in his marrow, where the blood cells are made. His immature white blood cells were multiplying rapidly; if they weren’t stopped, these “blasts” would crowd out the developing white and red cells and platelets and spill over into the bloodstream, spreading to his other organs. In the early hours of that first morning, Mike and Julie waited at Texas Children’s Hospital in a terrified daze, not knowing what to do. Finally a doctor gave them a piece of good news: Johnny was in the standard risk category, with a 70 percent chance of surviving. Julie broke down in tears. “Seventy percent?” she cried. “That’s barely passing!”
Johnny’s doctors laid out a battle plan: seven months of harsh weekly chemo, then three years of monthly “maintenance” treatment. His first chemo drug, vincristine, was so powerful that a stray drop on the skin or in the muscle would eat it away like acid. The treatment would kill good cells as well as bad ones, making Johnny susceptible to dangerous infections. His platelets and red blood cells would be replaced by transfusions, but the infection-fighting white blood cells would have to grow back naturally, from the very bone marrow that was being destroyed by the chemo.
Texas Children’s Hospital, one of the largest pediatric hospitals in the country, takes up several skyscrapers near downtown Houston; it’s a self-sustaining entity, with every kind of pediatric oncologist a kid might need, as well as heart and kidney specialists for the complications that often arise from cancer. From the start, Johnny impressed the doctors and nurses with his cheerful calm, his refusal to complain or cry, even when he got chemo injections. Johnny’s first shot of vincristine had to go into a vein in his hand, and the nurse kept sliding the needle in and missing. She tried again and again and finally gave up in tears, leaving another nurse to finish the job. On the eighth try, the second nurse got the needle in. Julie was frantic. Johnny didn’t cry at all.
After an intense seven days in the hospital, he went home but had to return for weekly clinic visits, which sometimes took all day. The hospital became Johnny’s second home, and his life began to revolve around a regimen of chemo injections, blood tests, transfusions, bone marrow biopsies, and spinal taps, which he especially hated. Sometimes tears would well up in his eyes in anticipation of them, but even then he wouldn’t ask, “Why me?” He’d hide his head in Julie’s lap for a minute, compose himself, and pop back up. Soon he was smiling again, especially when he talked about skating. During lulls in treatment he would put one foot on the base of his IV pole and skate the hospital hallway. Lying in his bed waiting for a transfusion, he would perch two fingers on his four-inch Tech Deck skateboards, turning his lap into a miniature skate park.
Mike was a regional human resources director at Starbucks and Julie was a stay-at-home mom, so she wound up spending most of the time with Johnny at the hospital. She held his hand during spinal taps, read e-mails from friends, stared at his face while he slept, memorizing the curves of his cheeks. She asked about every dose and test result and took notes on what the doctors said. In June 2005 she started a blog. She wrote almost every day, chronicling, cheerleading—“His nutriphils (white blood cells) jumped from 580 to 940! WOO HOO!”—and proudly bragging. “He never cries, screams, or complains,” she declared. “NEVER.” He was still a little boy, though, and she divulged her maternal pleasure when he would need a “3-2-1 blastoff!” count to take his pills. She wrote about her two other children as well: Joey was angry about his brother’s illness but envious of all the attention he was getting; Sophie was too young to understand anything but how much she needed her mommy. Julie’s optimism was occasionally betrayed by her fear. “Tomorrow is a scary proposition,” she wrote about the future. Still, the bottom line was simple: Johnny was going to beat this, one step at a time.
In late June, Johnny started getting some of his old pep back and was able to go swimming in their neighborhood pool. He begged to skate, but his parents said no. The doctors had said “nothing with wheels”; if Johnny got badly injured, he could contract a life-threatening infection. Besides, the chemo was affecting his nerves, making him walk funny and fall down a lot. Still, he pestered his parents, and finally, in August, Julie relented and took him to a skate park near their home. Johnny’s face was puffy and his stomach protruded. He looked sick, but he did fine, cruising up and down the ramps, crouching down and doing sharp 180-degree turns with his hands touching the pavement, just like the California skaters in the documentary Dogtown and Z-Boys. Mike and Julie knew that skating made Johnny feel like a normal kid, especially once school started and he had to stay home, away from all the extra germs. He worked on his handful of tricks over and over, especially the ollie, the most vital trick in skating, the ticket to flying. He stood on the board, his right foot on the tail, his left above the front wheels, and slammed his back foot down and launched himself. As the board popped up, he guided it with his front foot until the board was parallel to the ground and he was standing on top of it in midair. After the ollie came the kick flips, turning the board with his feet and landing on it again. Then came the grinds, rubbing the “trucks” (or axles) on the top edge of a ramp.
Mike bought Johnny a new board and started padding him up and taking him on his lunch break to a north Houston skate park and a famed local spot, the EZ-7 drainage ditch, which Johnny would have to himself. Skating isn’t like most kid sports. It’s not about team spirit; it’s about mastering yourself, seeing what you’re made of. Johnny would work on tricks over and over in his deliberate fashion, until each detail was just right. At the skate park, he would wait in line with the teenagers on the higher ramps and drop in. Older kids complain about the little kids at skate parks, who get in the way, crowd up the ramps, and can’t do any cool tricks anyway. The big kids even have a name for it: “little kid style.” Johnny was only seven but skated with the cool and grace of a teen. One night at a park, he was skating amid a bunch of older kids. Near the top of the ramp he went too fast as he tried to turn and fell off backward, slamming hard. Johnny picked himself up; nothing was bleeding or broken, so he dusted himself off and got back in line. The best skater in the park that day—an older kid who wore headphones and until then had ignored everyone else—skated over to Johnny and gave him a hand slap. After that the other kids started letting Johnny go in front of them.
Johnny drops in. On his first try at a rock and roll, he gets up to the lip, slams the board over, cranks it around—and loses his balance, hopping off onto the side of the bowl. He tries again, with the same result. He does it eight more times. He starts getting frustrated, grunting and muttering to himself. The rock and roll is a hard trick, a trick for the big kids, the boys with legs that are long and strong enough to swiftly pivot the board around. Johnny has ten-year-old-boy legs. They’re short and they’re tired. So is he.
In November 2005 Johnny was invited to the Texas Skate Jam for Make-A-Wish at Houston’s Southside Skatepark, a “demo” where pros raise money for kids with life-threatening medical conditions. The event began at eleven, but Damian Hebert, who ran the show, invited Johnny to come at nine to skate with some of the pros as they warmed up. Johnny arrived with his father and brother and felt shy until Kenny Anderson, from the Adio team, gave him a new board. Johnny hadn’t skated in two weeks and was weak and uncoordinated from the chemo. His hair was falling out, and he clearly didn’t feel well. But he wanted to prove himself.
He began to skate. He did some front-side ollies. He zoomed up the ramp and into space and did a front-side 360, turning all the way around in the air. Damian introduced Johnny to a Galveston teenager named Heath Cherryhomes, and the two boys began skating together. They blasted down the ramps and soared over the stairs. Johnny was obviously tired, but still he skated for hours, drenched with sweat. He didn’t act like a little kid, and he didn’t skate like one. By the middle of the afternoon, Johnny was joking around with some of the best skaters in the world. As the Romanos were leaving, a kid a few years older than Johnny asked him to sign his board. It was Johnny’s first autograph.
One of the pros Johnny met that day was Jim Thiebaud, a forty-year-old former Thrasher magazine cover boy and one of the most famous San Francisco skate punks in the eighties. Now he ran Deluxe Distribution, a company that made Real skateboards and Spitfire wheels. He also had a six-year-old son. When Jim got back to the Bay Area, he couldn’t shake the image of this seven-year-old kid who was determined to skate even though he was exhausted from chemo. He wanted to do something for him, to get his mind off the cancer, the hair, the future. Jim called Mike. “Would it make Johnny feel better if he had his own board? With his name on it?”
Mike laughed. Yes, it would.
The board would be a one-off thing, just for show. Real’s designers came up with a brilliant logo, a takeoff on the logo of the very first punk band, the Ramones. Jim made up five boards, sent two to Johnny, and took the others to a skateboard show. Everyone who saw the board loved it. Not just the logo and the feel but the story of Johnny Romano, the kid from Texas who was fighting cancer and skated as if his life depended on it. Jim asked the Romanos for permission to sell the board. Sure, they said, if the proceeds would go to Make-A-Wish. Jim agreed and made a batch of a hundred. They sold out. So he pressed up some more. They sold out too.
Skating is a small world, a subculture full of outsiders who bond over a common passion: to speed through the world on four small wheels and a slab of wood. Johnny was the ultimate outsider, the unlucky 1 out of 29,000 kids who get ALL. Word about him spread quickly, especially after Jim made Johnny a member of the Real team, the youngest professional skater ever. It didn’t matter that Johnny wouldn’t be competing; when the team roster went out for contests, his name was right there, beside Damian Bravo’s. Jim took out ads in skate magazines. “Thanks, Johnny,” they read. “When you turn 16 there will be a seat in the Real van waiting for you.”
As Johnny is trying the rock and roll, Heath, who is tall, with Buddy Holly glasses, does a front-side Smith grind, slamming up to the lip of the bowl and rubbing his back truck on it. He does a rock and roll and then alters it to a rock to fakie—instead of pivoting the board around, he rolls backward into the bowl. He does a front-side air, soaring out of the bowl, one hand holding on to his board. Every time he finishes a trick he looks over to see how Johnny is doing.
Not so well. Johnny tries the rock and roll again and again, but each time he jumps off or runs out of it, down into the bowl. It’s getting hotter and he’s getting more tired. At this very minute, his blood is being conquered by an army of mutating cells. It’s a wonder he’s even on his feet.
On January 22, 2006, Johnny started the final phase of his therapy; if he could make it through three years of “maintenance” chemo, he’d be in the clear. Every week he went to the clinic for his treatment, and every month he got a spinal tap. His cell counts would go up and down; the chemo would knock him out for a few days, and then he’d be back to normal. He would wake up with a fever and his parents would rush him to the hospital; the fever would go down and he’d come back home. He was unusually upbeat about his condition. When someone at the hospital asked how leukemia had affected him, he answered, “Well, sometimes it interferes with my skating.” A camera crew doing an inspirational video about courage asked Johnny questions about what he was going through, and he turned the answers around to skating. He didn’t like to talk about cancer or his feelings or his approach to being brave. All he wanted to talk about was tricks and boards, the way other kids talk about home runs and stolen bases. He didn’t want to be the kid with cancer. He wanted to be the kid with the skateboard.
And since Johnny was at least nominally a pro, he realized he had better learn to skate like one. He spent most of his free time on his board, sometimes riding with his new best friend, Heath, who would push him to try various tricks. Johnny usually didn’t need specific advice about, say, where to put his feet. He would watch Heath, figure out the details, and do it.
Out in the world, Johnny had become a little rock star. In March the Romanos went to a Deluxe demo at an Austin skate park and were amazed to see people wearing Johnny Romano T-shirts. In July the family went to California and attended the X Games and the U.S. Open of Surfing. Johnny met his favorite surfer, Rob Machado, who invited him onstage when he was inducted into the Surfers’ Hall of Fame; when the surfer told the crowd what a cool kid Johnny was, Julie wept. She later blogged about it, with a photo of Johnny onstage. She wrote, “I wonder what it’s like to be Johnny Romano.”
Back home Johnny settled into the life of a boy. He had his first communion and returned to school, as a third grader. A week into the semester, Julie got a call from the school nurse. Johnny, the kid who never complained when he got shots, was crying about a tummy ache. But when Julie arrived, she realized he wasn’t sick. He just missed his mom, who had sat by his side almost every minute of the previous sixteen months.
Johnny returned to Southside in November for Make-A-Wish and skated with the pros again. He jammed the tail of the board onto the pavement as he rolled and sent a shower of sparks flying behind him. He ollied up on a ramp and did a wheelie—a.k.a. a manual—for twenty feet. Jim Thiebaud and Johnny skated together. Jim did a front-side 180 ollie up a step. Johnny tried it and fell hard, but he got up and did it four more times until he got it right.
The following summer Real put out a new version of the Johnny Romano board, with a new design, and Adio started making a Johnny Romano shoe. At Make-A-Wish a few months later, Fuel TV asked Johnny to be its roving correspondent, and he walked around and interviewed the pros. They felt comfortable around the kid, who seemed ten years older than he was. Skating had gotten so big in the past decade, from the X Games to Tony Hawk’s video games, and here was a kid who personified the pure joy of the sport, the mad desire to skate no matter the cost.
By then the Romanos had moved to Galveston, to Mike’s late grandfather’s house in Jamaica Beach, which he had recently inherited. They liked the atmosphere of the beach town, and now Johnny could surf as much as he wanted—and, of course, hone his arsenal of skating tricks. Mike built a couple of quarter-pipe ramps that Johnny could skate on separately or combine into a half-pipe; he also bought him a rail he could ollie on and off of. Johnny would do the same tricks over and over for hours: kick flips, manuals, pop shuvits, hurricane grinds, Smith grinds. He would pull the ramps apart and fly between the two, his hair—finally growing in again—flung back, his arms calmly out, his fingers splayed, an assured smile on his face.
Johnny had regained a lot of the weight he had lost; he was getting healthy again. He was doing so well that in January 2008 his doctors raised his chemo dosage for the final nine-month push, hoping to destroy every leukemic blast. He also turned a corner with his skating. He had his body back, and Jim was sending him new boards; Johnny sometimes burned through two a week. He was in a zone, learning tricks his father had never imagined doing and making them look easy. Style is everything in skating, and Mike had always told Johnny, “It’s a lot easier to learn a trick than it is to learn how to look good doing it.” Now the boy who had always known his limits set them aside, flying off the ramp several feet into the air and landing gracefully. Skaters have big egos—it comes with the territory—and Johnny’s confidence crossed over into cockiness. He knew he was getting so much better so fast; sometimes when Heath was having trouble with a trick, Johnny would watch him, figure it out, then drop in and do it in front of his friend. Heath wasn’t amused. Once, at a ramp near the seawall, Johnny saw a group of teens trying and failing to do a hurricane grind, in which you scrape your truck on the lip before turning and rolling back down. Johnny watched them flounder for a while, walked over, and—without saying a word—did the trick. Then he walked away.
Johnny tries the rock and roll again and again. His father is starting to worry that he won’t make it, that this whole morning will be wasted, that he will return to the hospital tomorrow on a down note. But finally, on about the twentieth time, wet with sweat and frustration, he nails it—he wings the board around, leans his body in, and swings his legs just right, then rolls right down into the bowl. He throws his arms into the air and yells, “Yes!”
On Friday, May 16, 2008, Johnny relapsed. It wasn’t a complete surprise; he had been feeling tired at school and had started taking naps under his teacher’s desk. But Julie and Mike were devastated. A relapse isn’t merely a return; the leukemia is smarter now and has learned to evade the chemo. It’s stronger and needs stronger chemicals to kill it. The problem: These new poisons cause much harsher damage to the immune system, making kids more susceptible to life-threatening infections. At best, children who relapse have 50-50 odds. Johnny’s relapse came early, before his treatment was finished, so his were only 30 percent. The doctors told Julie and Mike that they needed to wipe out the blasts long enough to get Johnny a bone marrow transplant. “What are our other options?” Julie asked. “That’s it,” they were told. “This is his only chance.”
Mike and Julie decided to let Johnny cram as much into the weekend as possible before he went back to TCH. On Saturday they arranged for a big party with Johnny’s friends at a local paintball field. Sunday, Julie received permission to get into the new skate park so Johnny could skate one last time. Monday, he returned to the hospital.
A week later, Johnny almost died. He woke up with a 104.9-degree fever and was rushed to the hospital, where he was placed on life support and a squad of doctors worked on him for hours. A port that had been put into his vena cava had become infected, and his body had gone into septic shock. He was finally stabilized and moved to a room in the ICU, which he didn’t leave for eight days. The room was small, with space for only one chair, and when Julie got too exhausted to stay awake, she would lean over and put her head on the bed and doze. She and Mike split time watching over Johnny, and whoever was with him kept in constant touch with whoever was at home, sometimes texting each other deep into the night about medications and blood counts.
A week later an even deadlier foe attacked: a fungal infection in Johnny’s lungs. The antibacterial drugs used to kill the sepsis had done their job too well, wiping out the good bugs that keep fungus in check. By the time Johnny conquered the infection, he had lost twelve pounds and much of his hair. But he kept his spirit. When his four-year-old cousin, Lilly, visited and kept asking, “Is Johnny sick?” he kept answering, “Nothing is wrong. I’m not sick. I’m just here.” His doctors and nurses were amazed at his calm. “Let me know if I’m hurting you,” one would say as she stuck a needle in his leg, but Johnny would stay silent. Julie would have to watch his face for signs of pain.
Jim let the skate world know about the relapse on the Deluxe website. He set up a bulletin board and posted a link to TCH, where people could send Johnny messages on e-cards, which would be typed up on special cards by hospital staff. They started pouring in, dozens of get-well-soon messages a day, from skaters in Italy, France, Brazil, China, Australia, and Mexico. Soon the hospital ran out of cards and had to use index cards.
Pro skaters began visiting Johnny. A group of ten pros came to see him after another septic infection put him in the ICU; some of them drove down from Dallas, where they had been doing a promo appearance. Johnny was bloated all over and having chest pains, but he wanted to hear about their recent tour of China. A few said they couldn’t wait to ride Johnny’s new Real board. They crowded around his bed for pictures, which Julie posted on the blog. Thousands of skaters were now reading her daily reports.
In mid-July, a few days after Johnny began his second wave of chemo, the most famous skater of all time dropped in. Tony Hawk, in town for the touring Boom Boom HuckJam, visited Johnny, along with pros Jason Ellis and Kevin Staab. They talked about skating, the tour, and tattoos. At one point Julie asked Hawk about pain. “When you guys get hurt, do you tell someone?”
“No,” he said. “You just power through it.”
So that was it, she thought. Pros don’t cry. They don’t like to show weakness.
It wasn’t just skaters who took notice of the courageous kid fighting cancer. In late July a pair of photos showed up in Johnny’s e-mail account showing more than two dozen U.S. Army soldiers in Iraq flanking a large sign that read “We’re fighting for you Johnny Romano! Keep fighting for us! Get well soon!” Julie posted the photos on the blog, where she tried to maintain her positive attitude in the face of the increasingly bad odds. “There are no words to describe how proud Mike and I are of Johnny and his relentless, unwavering determination. You can see it in his eyes every day.” The Romanos would bring Joey and Sophie to the hospital as much as possible, and when Johnny was well enough to leave the ICU and stay in a regular hospital room, the siblings would sleep on an air mattress while their parents dozed on a foldout couch. The visits affected the kids deeply; Sophie would go home and give her Barbie dolls transfusions.
Heath came up from Galveston to see his friend, and each time Johnny said the same thing: “Skated lately?”
“How long you skate for?”
Heath would tell Johnny about the contests he’d competed in and the spills he’d taken. Jim would visit too, coming all the way from Berkeley. He brought along a couple of different Johnny Romano stickers he had made, including one with “JR” in a Superman-like logo. He would sit with Johnny and talk about their favorite tricks and the coolest obstacles. When Johnny’s mouth got so full of sores that he couldn’t talk, Jim would sit next to him and leaf through a skating magazine, telling Johnny about skaters or new gear. It didn’t matter that Johnny was 10 and Jim 43. Their passion was ageless. A front-side Smith grind feels the same to a boy as it does to a man. It feels great.
In early August the X Games were held in Los Angeles. One of Jim’s employees took a video camera around the backstage area and got world-famous skaters to give shout-outs to Johnny. Old-school pros like Steve Caballero, twentysomethings like Chris Cole, and young turks like Paul Rodriguez Jr. and Ryan Sheckler looked into the camera and told Johnny to “Keep the faith!” and “Stay strong!” One skater cheerfully said, “Get well so we can go rip, man!” It was as if the whole weird, disparate mix of outsiders that is the skateboarding world—young, old, white, black, Hispanic, short-haired, long-haired, dreadlocked, bearded, tattooed—had come together, all for the skater kid in Texas.
He’s done a rock and roll, but he’s not done. He goes up and does it again—and this time he adds his own touch. This time, as he turns the board around, he rolls his front foot inward. Most nonskaters wouldn’t even notice the gesture. But Heath does. He knows how cool it is. So does Johnny’s dad. It took him forever to learn to roll his foot like that.
Johnny does a few more rock and rolls, satisfied he has the trick mastered.
Mike and Julie never actually talked with Johnny about dying; they thought it was too heavy a conversation to have with their child. And the truth was, they couldn’t bring themselves to acknowledge that he might not pull through. But by early August it was clear the situation was getting dire. The blasts kept coming back, and different tests gave wildly different results. Doctors finally figured out why: Johnny’s ALL had morphed into the stronger, more lethal acute myeloid leukemia (AML). For the first time the doctors began talking to the Romanos with a different tone and using words like “comfort care.” Maybe it was time to treat the infections and stop the scorched-earth war against cancer and Johnny’s body.
Mike and Julie weren’t ready to give up. Johnny had come close to beating leukemia once and had survived the deadly sepsis and fungal attacks; they believed he would beat the odds again. Mike and Julie told the doctors, “As long as he keeps fighting, we’ll keep fighting.” On August 5 the doctors began a new, stronger chemo program. The white blood cells were overwhelming Johnny’s bones and tissues. He was in so much pain he was given morphine for the first time. His cheeks puffed out and his eyes swelled shut. He could barely eat or talk. Because his platelet count was so low, he bled easily in his mouth and nose, and blood oozed down his throat. Soon he was vomiting thick clots of it. He whimpered in his sleep, and Julie got in bed with him and whispered stories about what they would do when he got well.
Two weeks later it was clear the chemo wasn’t working. The blasts were still in his marrow, his white blood cell counts were doubling every twelve hours, and he was in obvious pain. Julie and Mike began, finally, to think the unthinkable. “Last night was the first time I thought Johnny might not get better,” Julie wrote on the blog on August 19. “I wanted so badly to ask him if he wanted to still fight or if he was just too tired to continue. But I didn’t. I am terrified to verbalize anything of that sort and even more terrified of what his answer might be.” Doctors said there was one last hope, a powerful experimental drug, clofarabine. They started it that night.
Over the next four days Johnny got four more doses of clofarabine. At first it seemed to be working, knocking out almost all the blasts. If doctors could get the remaining blasts out of his spinal fluid, they could give him a bone marrow transplant before the leukemia grew again. But the side effects of the chemo—as well as those of the other 26 drugs he was taking—were terrible. Johnny’s hands and feet swelled dark red and burned like fire. On August 23 he stopped breathing four times.
In early September, test results revealed that though many of the blasts were gone, many remained. Johnny wasn’t in imminent danger, but he would be as soon as his white blood cells began growing again. The only option was trying one more round of clofarabine. Mike and Julie gave their assent. Johnny, they had convinced themselves, was going to make it.
And then, on September 13, as if Johnny hadn’t faced enough obstacles, Hurricane Ike hit Houston. The day before, Mike evacuated Joey and Sophie to his mother’s house in north Houston, while Julie and Johnny stayed in a small procedure room on the hospital’s ninth floor. Johnny slept while Julie felt the building rock and watched downtown construction cranes spin like tops. The hospital survived, but the staff was in disarray, and doctors postponed the clofarabine until they could get a full crew together. But by the time they were ready, Johnny’s liver had begun to fail. They postponed again.
On September 22 Johnny’s white blood cell count started rising. It was time to either try round two of clofarabine or stop treatment altogether. The Romanos stuck with their decision. Mike wrote on the blog, “While there is still a chance, we can’t just give up.” The doctors would run a test in the morning, and if Johnny’s liver could stand it, they would move forward.
That night, doctors packed his nose and sinuses with gauze to keep him from swallowing any more blood. Even so, Johnny vomited thick clots every fifteen minutes or so. It got so bad that he couldn’t sleep, and he and Mike stayed up all night. They watched Curren: Trials to Title, a documentary about surf legend Tom Curren, and then the Quiksilver Pro France surfing contest, which was being broadcast live on the Internet. Johnny’s mouth was so sore he couldn’t speak, but Mike carried the conversation, talking about the waves and the surfers. When Johnny needed to vomit, Mike held a bucket under his chin. Mike would ask if he needed a drink, and Johnny would shake his head. Mike was so tired that he would rest his head on the bed railing, close his eyes, and sleep. Several times he woke up and saw Johnny staring at him.
Johnny finally fell asleep sometime after four. At five the doctor came in to check on him and Johnny woke up and fell back to sleep. Mike left to go to the bathroom. He wasn’t very religious, but Johnny had had such a rough night that he found himself offering a prayer. “If you’re going to take him,” he said, “I don’t want him to suffer.” Thirty minutes later, Johnny’s breathing changed. Doctors rushed in but couldn’t get Johnny to respond. He had slipped into a coma. A blood vessel in his brain—weakened by all the chemo and medications—had ruptured. A breathing tube was inserted into Johnny’s airway.
Mike called Julie, who rushed to the hospital; her parents brought Joey and Sophie. They all gathered in the room and said their goodbyes to Johnny. A priest gave the last rites, and everyone left but Julie and Mike. Doctors took out the breathing tube. Julie and Mike crawled into bed with their son, wrapped their arms around him, and he died.
Thousands of skaters all over the world logged on to the Romano blog on September 23 and were devastated to read Mike’s entry: “At 11:45 this morning Johnny passed away from complications related to his AML.” The entry was short; Julie and Mike had a funeral to take care of, in a city still reeling from Ike. The service was held at St. Ignatius Loyola Catholic Church in Spring. Several hundred people turned out and plastered the bright-red coffin with “Johnny Romano” stickers.
Two months later, dozens of pro skaters packed Southside Skatepark for the newly renamed Johnny Romano Skate Jam for Make-A-Wish. Johnny’s name was everywhere that day—in testimonials over the PA system, on stickers and T-shirts made by Real and other skating companies. Some skaters wore homemade shirts with images of Johnny soaring through the air on his board, forever flying. The event raised $103,000, by far the most ever.
Mike and Julie refused to let Johnny die in vain. Last September they created the JohnnyKicksCancer Foundation, which is run by Julie. The foundation has already raised $30,000 and donated it to TCH for research; its first check was given to Johnny’s doctors in a ceremony at the Jonathan M. Romano Skate Park, in Galveston. Childhood leukemia may be the most common kind of leukemia, Julie says, but it’s not talked about much, and she wants to change that. Her goal: to make Johnny Romano and childhood leukemia as synonymous as Susan G. Komen and breast cancer. She wants to put Johnny’s Real logo on Band-Aids (which look just like skateboards), popsicle sticks, and the rubber bands nurses tie around children’s arms when they draw blood. She wants parents to know the warning signs of leukemia. She wants them to be prepared.
Most of all, she wants people to remember her brave boy.
After Johnny nails the rock and roll, he and his family and friends have pizza at Mario’s, his favorite restaurant, and then they all go swimming at the beach. Finally the party winds up back at his house. It’s early in the evening, and while the other kids are off playing basketball or shooting Nerf guns, Johnny gets a second wind. He and Heath grab their boards and roll onto the driveway. They do some ollies and some kick flips. They set up the ramps and do some rock and rolls. They do a rock to fakie and a blunt to fakie. Johnny pulls out the rail and does a back-side 50-50. Then he does it front-side. He does tricks he has done a dozen times, a hundred times, a thousand times, again and again and again. He will skate as long as he can, until he can’t skate anymore.