About a Boy

The life and death of Johnny Romano, the youngest professional skateboarder ever.

by Michael Hall

September 2010

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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.

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