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The Month Luca Was a Borg

August 14, 2012 | Frank Bonanno

In 2007, Dr. Michael Handler cut out a small piece of my son’s skull and placed it in a deep freezer. He used the opening as a portal through which to attach electrodes directly to Luca’s brain. The wires that came from that portal hung on Luca like a thick patch of robotic dreadlocks, covered at the base with a heavy wad of bandaging, then plugged directly into a machine to monitor his brain activity. In another few days, Dr. Handler would use the map of that electrical activity to indicate which piece of Luca’s brain he would need to excise in order to control the epilepsy.

Let me back up a minute.

Luca was only nine months old when he had his first seizure. We thought he’d been choking until he had a second seizure the next morning. For the next three and a half years, Luca took the prescribed Depakote, and the epilepsy was pretty much controlled. Then, on his fourth birthday, returning from a sleepover, Luca had a seizure in the back seat of our car that lasted eleven excruciating minutes.

Everything changed.

Luca stopped tolerating the Depakote, and the seizures started coming—at first every few days, then a couple times daily, then ten, twelve, fifteen times a day. His neurologist, Dr. Alan Seay, tried the gamut of medications, each to my eyes more horrific than the first. One made Luca want to sleep the day away; another caused him to lose his verbal skills—and all the while the seizures kept increasing. As his fifth birthday approached, Luca was seizing every twenty minutes and right through the night.

Dr. Seay called Jacqueline and me into his office to discuss some options. He thought he saw an anomaly in the most recent MRI. “See here,” Dr. Seay said, pointing to a small area on his computer monitor, “See how this brain fold is just a bit deeper and crimped in on itself?” I didn’t, completely, but I nodded. “I think that’s going to need to come out,” Dr. Seay gestured to the swirls on the screen, “and you’re going to need to go to The Children’s Hospital and start planning for it immediately. I’ve made some appointments on your behalf.”

Now, it’s taken me five years to so distance myself from this part of our lives as to be able to write about it. There are blurry pieces. Some moments smudge because the scope of what was going on around them was just too—monumental—for me to recall them. Other parts, I choose to forget for now, for another five years, maybe, or maybe to remember never.

I do remember this.

I remember meeting Luca’s new neurologist, Dr. Kelly Knupp, for the first time, and being grateful that her office was small and uncomfortable. Just like mine. This was a good sign, an indication that this room wasn’t where Dr. Knupp spent the substance of her time.

I remember when I discovered the name of the neurosurgeon, I went directly to our reservation books to see if he’d been into the restaurants. He had–another good sign. Maybe Dr. Handler would see Luca as a person rather than a faulty brain in need of repair–not anyone’s child, but my child. My son.

I remember the first detailed conversation I had with Dr. Handler, asking him what tool he was going to use to cut through the brain tissue. Suddenly, clinically, we were talking about the texture of brain matter in general, he applying to my chef sensibility to explain the protocol. I liked Dr. Handler a lot—still do—he’s dynamic and professional and cares deeply for all of his patients. Our family spent a little over a month in all at Children’s, and Dr. Handler’s was the first face we saw every morning—alert and cheerful, and the last face we saw every evening, evenings that bordered on mornings, still alert, still cheerful.

That month at Chlidren’s, Luca was surrounded with thoughtful, caring nurses. Nurses who talked him through the wires coming out of his head and the tubes coming out of his arms. Nurses who thoughtfully explained the video monitors and the bathroom protocol and the litany of medicines. Nurses who had a way with small needles and lean little arms–who brought toys and meals, and once a dog for Luca to play with. Nurses who remembered my son by name without having to look at his chart, and nurses whose names I, of course, do not remember, but wish I could, because they’ve earned my forever gratitude. Thank you. You tended to Luca and to our entire family. Thank you.

That first surgery, the placing of the electrodes on Luca’s brain, turned our family into a kind of traveling circus. If ever Luca wanted to go somewhere—the bathroom, say—it was a three-man operation: one to carry Luca, one to make sure the wires between his brain and the monitors stayed flaccid, and one to move the equipment. Of course, Bonanno that he is, Luca flat out refused to have a seizure. Can you imagine that? Nearly a year of a randomly stopping mid-sentence so a wave of electricity could pass through his body, a year of twice hourly shivers and clenched jaws, of parents praying that all of this would stop so he could just rest and think a moment—and now, here, in a hospital where dozens of people were actually waiting, hoping, looking for any sign of seizure–stubborn, beautiful Luca absolutely refused. We hoped for maybe two days of monitoring, clear electrical proof of the trigger point, then bam—surgery. Instead, we had nearly two weeks of watching Luca, watching the monitors, watching each other as we played cards and board games and read aloud and watched every childhood movie that ever made it to video. When it finally came, everyone was there—my parents, Jacqueline’s, Marco, and a small army of nurses. That was enough, Dr. Knupp told us. Her team was ready to go forward with the second surgery, the one that involved removing a plum sized piece of Luca’s brain.

We knew the risks. He might be on medications for the rest of his life. His epilepsy could return. He could lose brain function. He could die.

While we were living at The Children’s Hospital in the Weeks of Waiting, we kind of tucked our greatest worries away and focused on the hope of a seizure. We roamed the halls with Luca in a wagon—to a cafeteria that served up the best damn blueberry pancakes I have ever eaten in my life, or to the strange glassed-in motion machines that eat and spit out balls. We became odd bedfellows with other families and other children—showering in the family stalls, partaking of the scrubs closet in the middle of the night and the stock of padded socks to cross the cold hospital floors. Some days we were sidetracked by random, pop-up toy stores–an American Idol stopped in to sing one morning. We distracted ourselves with the video library and its shelves bursting with heavy tapes and old fashioned two ton televisions. Microwaves lined a snack room so we could warm up Kraft mac and cheese, or hot chocolate, or packets of oatmeal late at night when the nursing staff was bare and the places to eat all shuttered and dark. The funky intimacy and relative safety of dimmed fluorescent lighting and quieted hallways made us forget, or pretend to forget together, that the greater risk was yet to come.

Jacqueline and I didn’t sleep the night before Luca’s main surgery. Chris Gregory dropped off a meal from Luca’s namesake restaurant, and we shared cabernet right out of the bottle, waiting for the sun to come up. We meditated on the future. Luca Learning to Ice Skate Backwards. Luca and Marco in Grade School Together. Luca’s First Love. These things will happen, we told ourselves on that narrow vinyl bed. It Will Be.

Babe was playing on the television when the nurse came to collect Luca for surgery in the morning. Marco climbed all over him, and we all kissed and kissed him. Told him we’d be waiting right here when Dr. Handler was finished.

And we were. Was it four hours? Eight? Luca came out on a stretcher, lopsided face swollen askew from the trauma of the surgery, strange and water baloony head, blackened eyes. Body too, too impossibly tiny for the moment. But he was awake. “Can we finish watching Babe?” he asked me, then to Jacqueline, “Didn’t you promise me a popsicle?”

I want to tell you more here—about the seriousness of the Intensive Care Unit and the new slew of doctors we encountered. I want to talk about how I discovered what kind of friends I had, the amazing commitment of our pediatrician, Dean Prina, and a restaurant family who sent food and love to us and our medical practitioners. There is, though, a different point to this story. I am sharing this piece of myself, my wife, my sons, for a reason.

We are so incredibly lucky that right here, in our own back yards, we have a great Children’s Hospital. No, better than great—The Children’s Hospital in Colorado consistently ranks, in nearly every category, as one of the best in the nation. We have a Children’s Hospital in Denver that has entirely electronic patient charts, bar-coded medications, loads of light, air, food, space–and countless caring, committed medical professionals. The Children’s Hospital Neurology Department is among the top in the world.

I want to give back to The Children’s Hospital, and I do so the best way I know how—through food. Every year, I host a dinner at Luca d’Italia in which every penny of the revenue goes directly to the neurology department. In the past, other father-chefs—Ryan Hardy, Lachlann Mackinnon-Patterson, Tony Mantuano—have stepped forward to cook with me for The Children’s Hospital. This year’s still a work in progress–but keep your ears tuned, please, and join us when the time comes.

Luca is ten years old now. He learned how to ice skate backwards; he kissed Aspen White in the first grade; he and Marco beat each other up regularly in the playground at Brown Elementary. Luca has a wicked scar that extends from ear to ear, but otherwise, little remains with him of that time at The Children’s Hospital. He’s been seizure free for five years and entirely off medication for three. Hallelujah.