Third of three parts

With the tumor removed, Gabriella began the healing process. Lisa and I held a vigil at her cribside. In the lounge, they offered chairs that folded out to beds. We took turns clutching at sleep, more me even though my wife was pregnant with Alexander. I pulled my knees to my chest in an exaggerated fetal position so my calves wouldn’t hang off the end. Terror touched sparks off exhaustion in the hollows of night.

It was all too much.

Again we faced an exercise in waiting. My imagination painted all sorts of dour scenarios, radiation treatment and chemo and worse. Much worse.

During rounds one morning, the mesh helmet came off. Her hairless head, the scar circling her scalp, her exaggerated hazel eyes – all of it summoned a pity too powerful for tears.

“What are we going to do?” my wife said for the dozenth time.

“I have no idea,” I confessed in the dim early light. “I’m out of hope.”

“You can’t be out of hope,” she said. “You have to keep hoping for all of us. For her.”

I knew I was the optimist in the family. I said I would try.

Soon enough we got to take her home again. The routine was familiar: the packing up of tiny clothes and hospital blankets the nurses insisted we bring with us. (I fixated on whether it was right to keep these things.) When I picked up her pink snowsuit, I remembered a moment on the day of the diagnosis when I walked in on Lisa’s mother, clutching that same snowsuit to her chest and dancing a mournful waltz, struggling for breath and understanding.

When we arrived home and I carried her into her bedroom, lifting her onto her changing table with the smile widening on her stricken face and our family around us laughing and pointing and me shivering with a hesitant joy, I wondered how much more we would all have to do the same. And I realized that I would do it however many times I had to, to keep her safe.

And then, once more, we waited. Waited for the phone to ring, for the sign that the doctors had an answer. For the results, preliminary or final, of the pathology report, from our hospital or from Chicago. Waited for anything to chip away at the horror of the frozen section.

We had waited so often before, but this was different. I could think of little else. Days passed. Lisa called their offices, first one neurologist and then the other, the plastic surgeon and the oncologist. Nothing yet. By now they should have heard something. Our minds invented explanations, mostly that they didn’t want to break it to us until Chicago confirmed the bad news.

One day, Lisa called and they told her to hold on. The plastic surgeon was coming to speak with her himself. Absently I put Gabriella down on her playmat. The darkness filled me again. I watched my wife’s face, expectant but with a sickly expression, then clearing, almost blank. Was it good or bad? She hung up.

In a dazed voice, she told me. The doctor was reluctant to get our hopes up until we got the final report from Pathology and the second opinion from Chicago, but it seemed as if the frozen section was wrong. So why did she look so pale? “He was surprised his staff didn’t tell us the last time we called,” she said.

“That was two days ago,” I said.

“He didn’t seem too phased by that.”

Anyway, it looked as if the tumor might be an angioma, a benign growth.

We could have been angry at that point, outraged even, at having been denied the answer for days that we had been desperate for, and we wonder why they hadn’t bothered to call us when they found out. “Wouldn’t they think we’d want to know that?” I asked.

Then jubilation sang through the house. I grabbed Gabriella under her arms and swung her around in merry circles, my daughter giggling with the rush.

“Be careful,” Lisa said, laughing through tears. “She just had surgery.”

A week later, Chicago seconded the opinion that the tumor was benign, although they called it cranial fasciitis. It seemed an appropriate name for the creeping monster that had cost Gabriella a piece of her skull, but in the end I didn’t care what kind of benign-tumor label they gave it.

We sat in that small room, Lisa and me on chairs, the neurosurgeons and the plastic surgeon arranged on the desk and against the wall. We swiped at the tears on our cheeks and tried to absorb the word the lead brain surgeon had spoken: sarcoma.

Meanwhile, they advised us not to give up hope. This was only the frozen section, we couldn’t be sure until we got the results of the biopsy. They said sarcoma again, using words I recognized, defect in the skull and pathology and then the giveaway, oncologist.

My fear took shape. I worried for my daughter, but no less for my wife, pregnant with our second child.

The doctors mentioned that the head of pediatric oncology at Robert Wood Johnson was a well-known figure and a wonderful man…but, alas, he was traveling. It would be his colleague instead who would come to see us. Hopefully today. In the meantime, owing to the peculiar nature of the…thing…they would send it to Children’s Hospital in Chicago once the pathologist here finished with it.

They gave us a few moments, allowed dark horror to settle about the small conference room like soot dumped through a ceiling fan. Lisa asked about chemotherapy, about radiation treatment, about other treatments, but the doctors deferred the tough questions to their colleague yet to come. The plastic surgeon explained the procedure for closing the woundslicing a horseshoe shape in our daughter’s scalp and stretching the skin to cover the defect, which I was slow to realize was the hole in her head, in both flesh and skull, where the tumor had been.

Then came the moment I dreaded even more than the anxious times to come trying to process the diagnosis. It was time to bring in the family. They crowded outside the door, white-faced with fright. Lisa’s mom refused to accept it, saying again and again, “No, not Gabriella.” My own parents were stuck in traffic.

A gurney squealed into the hallway, the one carrying our daughter. Lisa and I rushed out to meet it. I had always viewed myself as her protector, but I knew no way to shield her from this.

We called to her, fighting a deluge of tears at her swollen face, puffed round. Her head was encased in a wrap of bandages and a mesh helmet not unlike the chainmail models once worn by jousting knights. Gabriella was crying, delirious, frightened, lost, but her eyes crinkled at the sight of us. I shared her relief, as if just seeing her gave me hope.

Upstairs, in her room, we buttressed her hospital crib with our bodies. She shifted back and forth on crinkly chux paper. Our daughter brightened when we came into view, and I wondered how she could see at all following her recent cataract surgeries, the shadows moving above her bed, a rotation of anesthesiologists with a handful of needles, nurses there to take her blood pressure and her pulse and to read the beeping red digits on the monitors, and us, the familiar voices. It was almost as if she had grown accustomed to seeing without lenses. (She would have intraocular lenses implanted in a few months, but we had put off that and her strabismus surgery. The tumor was more urgent, for reasons I now understood.)

My parents arrived. They, too, were unprepared for the news. They seemed stoic in their response, but when I returned to Gabriella and came back past them to the sink, I found my mother wracked with sobs in my father’s arms.

For all we had been through, we all knew this was worse.

The oncologist arrived. At first he seemed almost bored by the details, and I became irritated. Then came an impossible twist. As a resident in a Long Island hospital, he had treated a child with the same diagnosis we had recently received, Opitz trigonocephaly. This quirk gave rise within me to an unexplained optimism.

The oncologist protected our flickering hope with a wait-and-see attitude: based on his cursory glance at the frozen section, he was unconvinced the tumor was cancerous, only unusual. He reassurances fanned our unreal expectations.

To be continued…

First of three parts.

The neurosurgeon said it looked like nothing to worry about, but she suggested we keep an eye on it.

A bump on the side of our daughter’s skull. She hadn’t fallen, hadn’t hit it on anything – we were positive about that. Where I had seen the blurring on her eyes even before the ophthalmologist raised the concern of cataracts, with the bump I was in a state of denial.

This was at least the third time Lisa mentioned it, and I responded, “What bump is that?”

She would stretch Gabriella out on her changing table, turn her smiling onto her side facing the window, and point to a patch of hair above her right ear. “Feel that,” she would say.

I would press one finger gently to her skull. And then I would remember. Until the next time. Until it grew and the neurosurgeon changed her opinion: it needed to come out. We brought our daughter for a second CT-scan, but they couldn’t tell any more than before.

Lisa’s mom took me aside that Sunday. “You think it’s cancer?” she said in her Italian accent. I told her I didn’t think so, but my hesitation didn’t make her feel any better.

It didn’t make me feel much better either. Colleagues and loved ones, in their concern, all asked for updates about our daughter. Gabriella was little more than a year old. She had nearly died of dehydration in her first month, endured operations to remove cataracts from each eye, and was seeing a range of pediatric specialists, each of which monitored another bodily system that could go wrong. I was tired of talking about it. I cringed at every fresh piece of news, realizing I’d have to convey it to my family, plus selected friends and colleagues. (In those early days, our circle of friends shrank, in part because we lacked the energy to keep them all close.) Sometimes I pawned the communications off on my wife, which was unfair even if she was a medical professional and I babbled through the events of the day. And now she was pregnant with our second child. I would wonder which was worse, not calling my parents with an update or not understanding the details of my daughter’s predicament?

The cataracts surgeries had been in October and November. Despite our anxiety over the need for general anesthesia, they seemed like routine procedures. This, three months later, was much different.

This time the waiting room seemed more remote. Our favorite anesthesiologist came in to reassure us that Gabriella had gone under just fine. We asked how it was going. “They told you?” he said. “It’ll be a while.”

When he left, Lisa removed a baggie from her purse, containing a couple of locks of Gabriella’s hair, snipped this morning before they shaved her head. It had taken a long time for her sparse hair to grow in, filling in the stubborn pattern of whorls and cowlicks, and the idea of a surgical nurse moving it away depressed me as much as anything.

Anything except a scar snaking across her skull, unshielded by hair.

Nine months after the geneticist had diagnosed her with Opitz trigonocephaly, complete with its prophecy that she wouldn’t live a year, I still struggled with the contours of Gabriella’s head. Lisa and I had never recognized the triangular shape that informed the diagnosis, but we also didn’t want her skull exposed, with its slopes and swells.

The waiting room filled. Members of both of our families arrived, their presence a bit foreboding: we hadn’t needed support for the eye surgeries. An elderly volunteer barked out the names of those patients who reached Recovery. At last, Gabriella’s name was on his list, but he couldn’t give further details. Time ground forward. Other patients’ family members assembled, half-watching the talk shows on the TV mounted on the wall, then rising to meet the gurneys that wheeled down the barren hall. Faces changed. The longer we waited, the more my insides twisted and churned. Hours had passed.

Finally they filed in, two neurosurgeons and a plastic surgeon responsible for putting the pieces back together when they finished the excision. Without words, with only a solemn crumpling of their mouths, they ushered us into the small conference room across the hall. I hadn’t even noticed it there, as if a space opened into the wall for their purpose.

There was a desk facing two wood-backed chairs. They sat us down, then composed themselves on and around the desk, three green-scrubbed ghosts almost indistinguishable in my panic.

“First of all,” one of them said. “We got this thing out.”

“What was it?” Lisa demanded, her training leaving her unwilling to let this drag out.

“We did a frozen section,” the lead neurosurgeon said. “The initial pathology indicated that it was a sarcoma.”

My wife exploded into tears and my eyes blinded with wetness. I didn’t know the medicine, but I knew words. Sarcoma sounded bad. It sounded like cancer.

“Once we got in there, it looked a little unusual,” they said. Then one added, trying to be reassuring, “But that was only the frozen section. We won’t be sure until we have the biopsy.”

To be continued…