Before he joined Jazz, Justin Zanik first helped daughter
By Bill Oram
The Salt Lake TribuneFirst published Oct 12 2013 12:56PM
On the day his oldest daughter turned 6, Justin Zanik flew out of Salt Lake City hoping he had just convinced the Utah Jazz to make a significant offseason addition. The agent had worked with top Jazz executives Dennis Lindsey and Kevin O’Connor before, promoting players and negotiating contracts.
This time, though, it was different. This time Zanik was the free agent.
A 39-year-old Northwestern graduate with an economics degree, Zanik had described the position in front of him to his wife, Gina, as his "dream job." For him, switching sides and joining an NBA franchise, one he deeply admired, would be a reflex.
But on June 4, a Tuesday, his mind was elsewhere. He was on a plane, heading not for Chicago, where he might have driven home to suburban Barrington in time for a birthday party with streamers and a pink-frosted cake, but instead to Rochester, Minn., home to the famed Mayo Clinic. Gina and their daughter Ava sat in a hotel room, hoping a doctor would call.
For weeks, headaches had tormented Ava, the first of three children. She screamed through every night. She lay on her pink beanbag in the family’s Barrington home, always moaning.
"Why won’t anyone help me?" was a common plea. Justin and Gina tried, making three separate trips to the emergency room in May, according to a journal Gina kept throughout the summer.
An MRI was performed, but it revealed nothing unusual. Three years earlier, a brain scan revealed a pocket of spinal fluid contained in a thin, cobweb-like cyst. Called an arachnoid cyst, the discovery itself was not particularly troubling. One to 3 percent of people are born with such cysts, said Dr. Sean Lew, the program director of Neurosurgery Epilepsy at the Children’s Hospital of Wisconsin. Ruptured arachnoid cysts are not a common enough occurrence to have an incidence rate, he said.
Ava had hit her head on the coffee table five days before the MRI, but the scan reassured the family that the cyst had not burst.
Doctors prescribed medication meant to counter the pain, according to Gina’s written account, but with the recent MRI in Ava’s file, were baffled by the severity of the headaches.
Justin Zanik was preparing for free agency and the NBA Draft. His agency, ASM Sports, represented Nerlens Noel, the projected No. 1 overall pick — who ultimately was drafted sixth and went to Philadelphia. Zanik shoehorned the interview with the Jazz into his schedule, but what he found when he arrived in Rochester was heartbreaking. Ava, who loves ice cream and Taylor Swift, was consumed by the pain.
That it was her birthday didn’t register. She did not want a cake and was uninterested when Justin and Gina took her to Toys R’ Us.
"It was just crushing," Justin said.
When they returned home to Barrington, presents sat unopened on the dining room table for weeks.
"Why," Justin remembered repeatedly asking himself, "aren’t we getting any answers from doctors?"
Seeking answers • The family returned to sleepy Barrington, a village of about 10,000 people. They settled there after moving across the country, from Los Angeles to New York to Chicago. Justin and Gina met when he worked for agent Mark Bartelstein — who coincidentally represents several Jazz players, including Gordon Hayward — and Gina was Bartelstein’s assistant.
Friends always teased them that they had a "designer" family, perfect children and the perfect house in a storybook town. But by mid-summer, life was far off script.
Following the trip to the Mayo Clinic, Ava’s pain had only gotten worse. Gina described her as "lethargic" in an update to family. She wasn’t eating.
"It was the most heartbreaking experience of our lives," Gina wrote.
On June 13, Gina drove with Ava the 90 minutes to Milwaukee, home of the Children’s Hospital of Wisconsin.
Frustrated by the response from medical professionals in the six weeks since Ava first began complaining of severe headaches, Gina put her foot down. "We are not leaving," she remembered saying in the ER.
This time she got through and doctors scanned Ava’s brain. Her cyst had ruptured, although it was unclear if it was due to her fall the month before.
Spinal fluid was being pumped into her skull, contorting her brain and causing double vision. The pressure could have led to blindness or, in an extreme case, death. But the trip to Milwaukee brought that to a halt.
The headaches could finally be explained. But how would doctors fix them?
Hoping for a happy ending • Justin Zanik sat in Section 109 at EnergySolutions Arena on Tuesday at the Jazz’s preseason opener against the Golden State Warriors. Beside him, Ava sat with her light brown bob haircut pushed back by a sequined pink headband. She plucked kernels of popcorn out of his cupped left hand. After it was gone, Ava tangled her fingers with his.A foul was called against the Jazz and boos began to rise inside the arena. Ava turned to her father and asked, "Can I boo?"
Justin looked at her and said, "No, everyone else can boo but you can’t." Then he reconsidered. "Once you can tell me what you’re booing I’ll let you boo."
Four surgeries later, the headaches are gone and Ava is, more or less, a normal little girl. She points proudly to a ridge on the left side of her head where a subdural shunt was placed under her skin. A tube through which the shunt pumps extra spinal fluid can be traced down her neck and to her stomach.
After doctors in Milwaukee determined Ava’s cyst had burst, they spent much of the summer trying to clear excess fluid out of her head. Spinal fluid is a river, constantly pumping in and out, but hers was pooling and not being reabsorbed into the spine.
On June 15, doctors drilled two burr holes into the top of Ava’s head and inserted tubes to help the fluid drain.
"Ava had brain surgery today," Gina wrote in her journal. Then, hopefully: "Her headaches improved immediately."
However, a week after surgery, the headaches returned.
The tubes were reinserted on June 25 and fluid drained for eight days. When Justin worked the NBA Draft on June 27, his daughter was connected to tubes in a hospital in Milwaukee.
The fluid continued to accumulate and Ava had headaches the same day the tubes were removed. On July 3, Lew performed a fenestration of the cyst, cutting a path through its other side to try to redirect flow.
Days later, it was clear that procedure had not worked either.
The subdural shunt was a last resort. While 100 percent effective, it comes with its own set of complications, namely that a gizmo would be in Ava’s body for her entire life.
"Why would I want to put something permanent in my daughter if I don’t have to?" Justin Zanik said.
On the Fourth of July, Ava was on morphine and slept through the firework shows that could be seen from her hospital room. Gina never left the hospital and encouraged Justin to spend nights either at home or in nearby Madison with her parents and their two other children, 4-year-old Oskar and 2-year-old Lucy. That night she listened to Pachelbel’s Canon in D and watched fireworks pop over the city. In her journal the next day she wrote, "This journey must have a happy ending. If a shunt takes her pain away, sign me up."
Settling in Utah • "The reason we don’t put a shunt in everybody up front," Lew, the Milwaukee neurosurgeon, explained, "is because usually we don’t need to."
He described the procedures as "trial and error" and "escalating treatment until one of them works."
The shunt went in on July 12, nearly a month after Gina insisted on a new brain scan in Milwaukee, and more than two months after the headaches had begun in earnest.
Shortly after, things returned to something resembling normal. Justin had time to think again about his career.
A noted collective bargaining agreement expert with an emphasis on European players, Zanik was a priority for the Jazz throughout the summer. But the organization also knew they couldn’t try to woo him while he and his wife were battling doctors, medical institutions and a rare medical condition inside their daughter.
"We put it on hold," O’Connor said. "We said, ‘You’ve got a great opportunity if you want to interview for the job and this is an opportunity for you, but your family comes first.’ "
It was one week after Ava was sent home from the hospital, in late July, that Justin accepted the job with the Jazz. Gina was driving Ava home from a follow-up appointment when he called.
"I had other things I needed to take care of before I could really focus on this," he said last week, "and when I had time to focus on that decision it was a very quick one."
They’re settled here now. Zanik occupies an undecorated office on the second floor of the Zions Bank Basketball Center and when Ava visits, she likes to say, "I had four brain surgeries" — although to be medically correct her surgeries were cranial, Lew said, adjacent to her brain not in it.
On her first day of kindergarten at The Waterford School in Sandy, Ava answered questions for a classroom-wide questionnaire. At the top of the page in Comic Sans font were the words, "Get to know … " and in the upper right corner a photograph was pasted of Ava from Christmas the year before. In it, she still had long hair.
Her answers went like this:
"My name is: Ava"
"I like to eat: ice cream"
"About my family: I have a brother, Oskar, a sister, Lucy, mommy, daddy and my dog Louie"
"The most interesting thing about me is: I have a shunt"