In 2018, Marc Palmieri’s daughter Anna underwent epilepsy surgery with Drs. Caitlin Hoffman and Theodore Schwartz. We told the story of Anna's surgery here, called "It's Time We Step It Up." The origin of that quote can be found in the book excerpt below, which describes the excruciating moments when Anna's parents realized a new strategy was needed to save their daughter.
In his new book, She Danced With Lightning, Marc chronicles not only the decade of mystery around Anna’s epilepsy, but how she landed in the hands of Dr. Hoffman and Dr. Schwartz, where her life would be saved. Anna had been diagnosed with a brain lesion at five months old at Weill Cornell Medicine, though the family continued her care at another hospital. In this excerpt, Anna’s mother, Kristen, has insisted they bring Anna, now eleven years old, to a new set of doctors, as her situation has become dire. An acquaintance had given her the name of Dr. Schwartz at Weill Cornell Medicine, who in turn recommended Dr. Srishti Nangia. The family makes an appointment, but a terrible cluster of intense seizure hits. Kristen calls the hospital as she speeds a seizing Anna to the ER, where they met by department director Dr. Zachary Grinspan. It would be this that led to Anna’s eleventh-hour, life-saving surgery, and a family rescued from the brink of the unthinkable.
I ran to the car and called Kristen the moment the engine was started. I drove toward the Long Island Expressway.
“We took the bridge,” she said. “The expressway is stopped, and I didn’t want to be in the tunnel.”
“Are you sure about this, Kristen? We’ll be starting all over at a whole new hospital-”
“Head of the whole department picked up the phone, Marc, Dr. Grinspan, and we’ve been talking all the way in.”
My first thought was that Kristen was grossly mistaken about whomever she had on the phone. In all the years with so many hospitals, I don’t think we ever called one and got an actual doctor on the phone. Not this fast, anyway. One calls you back after a few minutes, but sure as hell not a director of anything. It’s a receptionist, then voicemail, then maybe a doctor “on call,” who would advise very generally, at best.
Now, my second thought was that whoever this Dr. Grinspan was, this world-renowned scientist at this peerless institution, based on my wife’s call from her car, must have immediately recognized Anna’s situation as so dire that it warranted even himself to come barreling down from whatever corner office he worked in and into the bedlam of the ER front lines.
“Kristen, I don’t think program directors at major Manhattan hospitals suddenly pick up the phone on a random call and agree to escort a new patient inside. As we know well, it can take months to get an appointment with these people.”
“He said he was able to bring up Anna’s original scans from when she was a baby. He said he’d be there waiting for me, and they’d have a bed for her.”
Dr. Zachary Grinspan. Director of the Pediatric Epilepsy Program at Weill Cornell Medicine and the NewYork-Presbyterian Komansky Children’s Hospital at Weill Cornell Medical Center. Professor in Pediatrics and Population Health Sciences. Yale, Einstein College of Medicine, Yeshiva University. Major hospitals, publications, grants, studies….
Kristen was right about the expressway. It was moving slowly enough to read long and wildly decorated biographies on the hospital website with my iPhone. Dr. Grinspan’s headshot was casual, almost in repose, smiling warmly, like it was in a playbill for some low-stakes community theatre production of a Neil Simon comedy. He looked like he was in his early thirties or younger. I knew this was impossible based on his graduation dates, but that’s how he looked.
He had already gone to alert the ER that we were on our way, then called Kristen back after viewing Anna’s old MRI scans. She told me this was why she avoided the tunnel: to keep reception clear and stay available for his calls.
“Hi…hell…hello, Dad,” I heard.
“Anna,” I said. My voice hoarse.
“We’re gonna stop it, baby,” I said, loudly.
I heard my mother-in-law, Geri, repeat what I’d said.
We ended the call to make sure Grinspan wouldn’t go to voicemail. My car crawled forward as I cursed every foot of the LIE, which stretched ahead like a straight and endless useless runway.
By the time I parked the car in a garage on East 60th Street and sprinted to the same ER entrance we’d carried Anna through over ten years before, the transfer to Critical Care had been initiated. Kristen texted me to change course, not to enter by the ER but rather through the hospital’s main entrance, get to the PICU, and wait. In the main lobby, I stood in line to show my identification at the entrance hall security desk.
I passed new mothers leaving with their new babies, food delivery guys, doctors, nurses, and techs coming and going in scrubs, lab jackets, dresses, and suits. I passed family members visiting someone, looking happy or looking terrified, or looking lost. There was the smell of food from the café, tucked around the corner. The ten years since our first time in this place felt erased.
I took the elevator up to the fifth floor, and when the doors opened, I realized I remembered exactly what turns to make along those same colorful New York City-themed walls. I stopped in the hall by a waiting lounge outside the double glass doors that sealed the unit, where a few people sat watching a mounted television. I texted Kristen and Geri to ask if they were inside the PICU yet. No answer. I figured they were in transit, in elevators or halls with no cell service, and, breath by breath, I fought off the thought that they weren’t responding because something calamitous had already happened.
After ten minutes or so, I walked to the PICU’s double glass doors and pressed the pad of the identification card reader. The doors clicked loudly and slowly swung open. Two nurses and a security guard sat at the reception area. I tried to look straight at them when I gave Anna’s name, only at them, nothing else, remembering too well what unbearable suffering loomed here in every direction.
“I don’t think they’ve brought her up yet,” one of the nurses said, looking at a computer screen. “I can bring you to the room she’ll be in.”
I was led to a large room overlooking the East River. It may have been the very same one we were in years ago. A nurse’s station was at the front, positioned to observe four corner areas, each outfitted for a patient. Two were currently occupied, curtained off. Ours was near the window. When I got to the far corner, the empty space where Anna’s bed would be, two nurses were setting up machines and an IV pole. A technician was readying the monitor and wires of an EEG. I looked at my phone. My sister Brianne. She worked near Lincoln Center at Macaulay Honors College.
DON’T KNOW ANYTHING – WAITING IN PICU – NY PRESB 68th ST
A muffled cry of a small child came from behind one of the spaces in an opposite corner. Then a high-pitched cough and a woman’s weeping. She began talking lovingly, gently like a quiet song.
“Shhh. Mi bebé , Mi bebé especial,” she said. The baby’s cough came again, muffled now, as if the woman had held its head against her. “Shhh, mi ángel…”
As I had made my way here, from the sidewalk to this window, through the beeps, loudspeaker calls, trays of supplies, and wheeled machinery being pushed, I had been reminded of my first impressions of this place, where sorrow strangely dwelled with comfort. With that mother’s voice behind the curtain in the corner, I remembered that from here, whether one stays an hour or a month, a parent leaves irrevocably changed.
Anna saw me the moment they steered her gurney into the room from the wide hallway. Flanking it was Geri, a PICU floor doctor, and a nurse pushing the bed from behind Anna’s head. They’d put her in the gown already.
“Hi Daddy,” Anna said, matter-of-factly, like we’d just bumped into each other in the living room at home, on a boring day.
The room’s nurse came from her station to our corner as they rolled Anna into place and locked the wheels. The technician began to fix protective pads to the bedside bars. I noticed a white cotton blanket folded at Anna’s feet, and just as I reached for it to drape it on her, a seizure struck. Her eyes shot up toward the ceiling and she kicked the blanket out of my hand.
I moved quickly to her upper torso, put my arms around her, and held on. Her legs kicked and kicked, her upper body twisted sharply to her right, lurching against the pad on that side. After a minute or so, she moaned painfully. Geri and the nurse went to help me, as Anna urinated onto the bedsheet.
As the seizure relented, I saw that the privacy curtain had been pulled around our area. I pulled Anna up. One nurse quickly began to gather fresh sheets as another began to remove the soaked ones and spray clean the bed. I moved with her to the other side, where a chair sat, and leaned over the padded bar to get a better position to keep Anna off the bed. I could feel my lower back muscles nearly tear, my lower spine feeling like it would snap. At this awkward angle, with all my strength, I got her up out of the bed and into the chair. I could feel sweat on my forehead. Anna laid her head back into my hands as I stood behind her. I heard Kristen’s voice from the other side of the curtain.
“Here?” I heard her say. She entered with a man dressed in civilian clothes, who I realized was Dr. Grinspan.
“Did we get the IV?” he said immediately.
The nurses, wrapping the new sheets around the bed, told him she’d just had a seizure. He looked at me.
“Hi,” I said.
“Hi. Zach Grinspan. You’re Dad?”
“Yes. She just had a seizure,” I said. A nurse held out a new gown. I removed the one she was in and began fitting her into the new one.
“My eyes hurt,” Anna mumbled.
“Okay, let’s get her back on the bed,” Grinspan said. He walked toward me, rolling up his sleeves. “Ready?”
“Yes,” I said.
He moved opposite me, reached under Anna’s arms and began to lift her legs. He leaned backwards, and we got her over the side bars and lowered her down. He gave an order for an IV of some kind, and another nurse began to prepare the top Anna’s left hand.
“We have to stop this cluster,” he said. “That’s the first thing. I looked at her scans from 2006.”
Anna went into another seizure. The nurse pulled the IV needle back from her hand as Kristen and Geri now stood at Anna’s side and held her down. The PICU pediatrician came in through the curtain. He stood with Grinspan at the foot of the bed, watching Anna.
“How long between?” Grinspan asked, his voice slightly raised.
“About four minutes,” one of the nurse’s said, looking at her wristwatch.
Anna flailed again and made a gurgling sound, red in the face, eyes wide. I watched the doctors watching her.
“You’ve lived with this for so long,” Grinspan said.
I thought it was a strange thing to hear, in the circumstance. It was as if in this moment, he let himself reveal an emotional acknowledgment a doctor normally wouldn’t, in the midst of a fluid emergency.
“Yes,” Kristen said. She was crying. Grinspan looked at me.
“We need to do an MRI soon as we get her stable,” he said.
“I think we are going to see a lesion, and I believe I’m speaking prematurely, but I think I’m right,” he continued. “We will see the lesion, in the front left, and I think it’ll be clear that…at this point….”
He hesitated, as if he was about to say it one way, but now wanted to say it another way.
“I think it’s time we step it up.”
“How?” I wanted to say, but I couldn’t. I didn’t want to hear it.
“I’m ahead of myself,” Grinspan continued. “Dr. Nangia told me not to get ahead of myself and push for surgery.”
I felt my jaw try to drop, but it wouldn’t since I was grinding my teeth.
“We haven’t seen Dr. Nangia yet,” I said, my head reeling, thinking that I could slow this down. “We had our first appointment scheduled for—”
“I just spoke to her,” he said. “She’s at a conference and will be back in a couple days.”
On day one, all those years before, it was explained to us that in the treatment of epilepsy, medication comes first. One tries, then tries another. Then, another. Then, mixes it with another and another. If medication had any chance at all of controlling a child’s seizures, or if the child might outgrow the condition, the risk of surgery would not be taken. And so one tries yet another.
But they won’t find a lesion, I thought. Dr. Merchant, right here on this floor, had said the same thing he just did, when Anna was months old, based on those old, outdated, misread MRI scans. But later we learned it was something else. There is no lesion. I wanted to clear things up right away.
“Doctor, another hospital ruled the lesion out a couple years after the MRI you just saw from 2006,” I said, eager to have him understand that this re-diagnosis was the best news we’d ever gotten about Anna’s epilepsy. I told him we understood that if there wasn’t a lesion, it meant whatever was in her brain causing the problem could be diminishing on its own, year after year, until eventually, it could be gone. That’s what the newer scans had shown. That’s what expert radiologists had said. There was no lesion to have surgery for, so discussing surgery wouldn’t make any sense. Not for a minute should we talk about—
“I think that’s wrong,” he said. “I think it’s a lesion, and it’s wreaking havoc.”
“She’s had two MRIs since then, and the latest didn’t even show anything abnormal. A couple doctors felt these were panic attacks.”
I felt as if I were begging him to change his thinking.
“Sometimes, different MRI machines pick up, or fail to pick up, different things. We’ll see. We need to get her stable for a scan. These aren’t panic attacks. I can tell you that.”
The nurse inserted the IV into the top of Anna’s hand.
“We were always under the impression that surgery wouldn’t happen unless there was nothing else possible,” I said. If there was some kind of plug to pull on this scene, I would have pulled it. Surgery. I didn’t want to hear the word again, ever.
“Your wife has told me all the things you’ve tried,” Grinspan said. “If it’s what I think it is, and where I think it is, going in to get it might be…her only chance.”
I looked at Kristen and Geri. I assumed they were as wildly terrorized as I was that this was even being discussed. I assumed they had already, as I had, pictured Anna on an operating table, skull split open, for the unthinkable measure of brain surgery, awakening, if she ever woke at all, damaged, changed in a way that I knew nobody, doctor or otherwise, could predict. I expected Geri to stand up and declare, “Absolutely not. Brain surgery is not happening.” Geri, who always healthily doubted modern medicine, who researched and scrutinized every pharmaceutical we were ever prescribed, never confident in any of them. Every few months, another alternative herbal remedy, name of some holistic doctor, nutritionist…. She had so much studied skepticism of whatever doctors came up with. Now, she was sitting there, listening to this without protest? Brain surgery? The ultimate “western” option? Where were Geri’s, where were my wife’s, cries of “Not that! Never!” that were loud and clear inside me?
They kept their eyes on Anna, their arms across her body, their hands stroking her hair, her face, her arms. I looked at Anna’s head, the very first of her I saw when she came into the world. I looked at her pale, slightly freckled skin, which ran pristinely up her forehead, draped off the left and right by her long, beautiful hair. A technician I hadn’t noticed leaned in and began to pull it back and into braids, to make way for the EEG leads.
Grinspan stared down at his patient. The smile in his headshot nowhere now. After a long moment, he began to order more drugs to be delivered by IV to stop the seizures.
Used with permission of the publisher. From She Danced With Lightning:My Daughter's Struggle with Epilepsy and Her Boundless Will to Live (c) 2022 by Marc Palmieri Published in August 2022 by Post Hill Press.