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…

I’ve posted a lot about the more traumatic hospital experiences of Gabriella’s first two years. But not every trip to a medical facility is for removing cataracts or for clubfoot surgery or, as I described last time, for excising a bump that came back on the frozen section as cancerous. This week I had planned on completing that story, but after our weekend, it will have to wait.

Today I’m writing about patience instead.

Gabriella’s deteriorating oxygenation started on Thursday. Each night when we get her ready for bed, we attach a pulse oximeter to her toe, which enables us to track her heart rate and her oxygen level as she sleeps. With a baby monitor, we often hear beeps through the night; most of them mean nothing, but many require going downstairs to her bedroom to check. So it was that night.

Patience.

A concern about aspiration led us to monitor her breathing more closely. As we feared, her O₂ rate hovered around 90, so we set up the oxygen concentrator to get her what she needed. This large gray box shrieks when it’s turned on, then settles into a dispiriting hum, and as a result one of us needs to stay close by. Because Gabriella wasn’t laboring as much as she sometimes has, we arranged it to blow air from nearby rather than using a mask or a nasal cannula. Every time the pulse ox sounds more than once or twice, we had to make sure the sensor had not become dislodged, to shift her bodily position to improve the flow to her lungs, to move the tubing an inch in either direction to better direct the blow-by. This happened many, many times that night.

More patience.

On Friday her oxygenation was better, but we gave her extra respiratory treatments every four hours. Nevertheless, at around midnight she wound up back on the blow-by. That meant more sitting up, monitoring beeps, interrupted sleep.

I have never been a patient person. But I try.

By Saturday morning, we knew we had to do something. This situation wasn’t as threatening as a growing bump on our daughter’s skull, but it held its own insidious risks, so Lisa wanted a chest X-ray. To avoid the emergency room, we tried a nearby clinic; if the scan showed anything of concern, we could still take her to the ER. But the staff at the clinic worried about being able to X-ray her while she was lying down, and said that even if they could, it was unlikely they could get a reading before Tuesday. So off we went to the hospital.

It was a bright new day, and I felt optimistic: maybe we wouldn’t be there for too long…

By the time I dropped them off and parked the car, Gabriella was checked in. Just like the nurse at the clinic, the staff here expressed relief when Lisa handed them the medical history. They agreed we needed a chest X-ray, plus bloodwork and a urinalysis. They proposed an intravenous drip for antibiotics, and the nurse succeeded on his first try – it often takes blowing multiple veins before one holds – so we held Gabriella’s hand for hours to protect that IV, that vein.

Hospital stays have always been a challenge for my inborn impatience. We know the RNs and interns and techs and orderlies are doing their best, but it seems like we’re waiting most of the time. Waiting to see a doctor or nurse. Waiting for transport for a test or an X-ray. Waiting for a result. And most of all, waiting for discharge.

When we’re admitted after surgery, we expect a long stay. On visits like this one, when we were pretty sure even before we arrived that she had congestion (and likely an infection) in the upper airway and not much else, when our primary goal was a confirming X-ray and antibiotics…that’s when the tedium is awful. The cramped space in the ER, the sounds of rolling gurneys and beeping monitors, the pitiable sight of sick people and worried loved ones – all of it becomes oppressive. But we do what we must. We wait. And we wait.

And then suddenly it’s time to go and the nurse is unhooking the IV tube and we’re locating one last diaper for a change and receiving discharge papers and a prescription and we’re using a two-man lift to hoist Gabriella back into her chair and we’re wishing everyone a happy end to their holiday weekend and we’re off to the pharmacy downstairs with 20 minutes to spare before they close and I’m navigating the construction throughout the hospital to get to the parking garage to get the van and I’m pulling around to pick up Gabriella and Lisa and we’re putting seven inert hours behind us and heading for home.

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…

This week we took Gabriella down the boardwalk again.

Over the years, she’s gone from being pale-faced and intimidated by the noise and crowds to showing a sense of wonder, laughing at the binging and beeping of the carnival games, watching the people as they pass. As always, she enjoys the motion, but I suspect she also harbors memories of past trips. I know I do.

The most vivid for me started in the usual way. The four of us made our way along the concrete path alongside the boards, centered around Gabriella’s wheelchair. She was younger then, seven or eight years old, and it was summer, so near Alexander’s sixth or seventh birthday. She was complaining, as she often did, more uncomfortable perhaps because of the curvature of her spine and the low tone of the muscles that sagged around it. Even without her whinging, we were a spectacle, and those who walked in the other direction got their money’s worth.

Staring people have always bothered Lisa and me. It wasn’t enough that we felt a little unsightly rolling along; when she complained and we had to shush her and plead with her and pull her over out of the main traffic to soothe her, we became more susceptible to looks and whispers.

The small children never bothered us as much as their older siblings and their parents. There is little excuse for an adult staring at a girl in a wheelchair.

Short of making (more of) a scene ourselves, there was little we could do about it. I’ll admit I’ve stared back, even to the point of craning my neck and turning around to glare at someone who’s gone past us. Sometimes they are still looking in our direction, but just as often they’ve moved on and I’m the one left with a sheepish expression.

At times the staring would irritate her brother as well. “Why do they have to stare?” he would demand. How do you answer that?

On this particular evening, we rolled up the boardwalk, trying but failing to ignore the prying eyes. It was warm but not oppressive, busy but not mobbed. I remember Gabriella’s whining and Alexander’s frustration, and we considered turning back. We had stopped in front of one of the many attractions promising prizes for skill.

That was when a small girl with a blonde ponytail approached, holding her mother’s hand. She presented herself before Gabriella’s chair and, with great pride, handed her a stuffed animal. Our daughter reached out an arm but was unable to grasp the plush toy, so Lisa accepted it from the girl. “She won it,” her mother said. “She wanted your daughter to have it.”

From the time she was a baby, many people have given Gabriella gifts, a lot of them strangers, from children to young men to elderly women. She’s received religious medals, a friendship bracelet, dolls and stuffed animals. The memories blur with one another, the different givers and gifts centered on the deep gratitude we always feel. I’ve noticed that the giver often has an awestruck look that makes me wonder whether they’re getting even more from the exchange.

But of all the gifts she’s gotten, that stuffed animal on the boardwalk is the one I most remember. Time froze for an instant, then the child, her bravery expended, turned into her mother’s knees. As they walked off together, I got the sense that people were staring again, but I couldn’t see them as clearly this time because of the tears in my eyes.

As we pushed Gabriella along the boardwalk this week, I recalled again that girl, forever bound to our daughter by her act of courage and generosity. By now she’s a young lady, and whatever path she takes in life, whether as a mom or a teacher or a leader or a citizen, it cheers me to know her influence will fall upon others.

Her feet were the first sign of trouble.

Gabriella was our first, but even without Lisa’s medical knowledge I knew something was wrong. My wife had just undergone a Cesarean birth, and thus she was a post-op patient herself, with nurses whisking around her bed in the OR. So it was me staring at her feet in terror.

One nurse said “clubfoot”. I remembered the word from novels as an unfixed ailment that left a character limping all his life. But this was my daughter, only minutes old.

They called her left foot a vertical talus. That was the first medical distinction I learned on a day of many: a clubfoot twists down and in, while a vertical talus turns up and out. Gabriella’s left foot lay parallel with her lower leg.

From her hospital bed, Lisa asked the Apgar scores and doctors and nurses discussed other symptoms I was too numb to process, but I couldn’t unsee those feet. I also couldn’t unsee her fragile eyes. Because her mom was getting treatment, I got to hold our daughter first. As soon as the nurse allowed it, I pulled her close.

But what was going on with her feet?

The pediatric orthopedist was one of the first doctors to examine Gabriella, and he reiterated the words, clubfoot and vertical talus, labels as different as her extremities themselves, the first as harsh as an insult, the other cloaked in medicalese.

He recommended casting her. In came the technician with a bowl of water and white strips like tape, dipping and laying and molding them into papier mâché booties from her knees to her toes. To my relief, the casts rendered her feet identical in shape.

It was a week later, a few hours before we recognized our daughter’s dehydration, that we removed the casts for the first time. (The orthopedic nurse had changed them a few days earlier, soaking them away layer by layer.) Now we did it ourselves, me holding her and whistling, you moistening and unwrapping the white layers like a gravelly Ace bandage. I watched with anticipation, hopeful that we would wind up with two feet that looked … well, more normal. But as I learned that day, normal had taken on a new definition in our house.

From the start, Gabriella’s feet were dissimilar. The right foot, the club, was thinner, the toes longer, inflexible, each curled atop the other, and pocked with bones that seemed out of place. One bone protruded badly, and I recall in the weeks that followed Lisa reminding me that the orthopedic surgeon had said we needed to monitor it to make sure it didn’t break through the skin. (I must have blotted out the memory of the doctor saying that originally.)

The left foot was different: flabbier, mottled purple like an uncooked sausage, more bendable. The toes were chubbier. And the bottom lay flat; I thought of the Peanuts characters.

They looked like the feet of two different unfortunate children. And yet from my early unease, those feet became a focal point of our love for her.

One day, with Gabriella lying on her back, Lisa raised her feet and squealed, “Gabriella’s got feeeeeties!”, following with a barrage of kisses, alternating in rapid-fire between her tiny soles. Our daughter found this hilarious. Soon it became a regular game for both of us.

When she was three months old, the orthopedist prescribed AFOs, orthotic devices of a hard plastic with Velcro straps that we used to press the feet into a corrected position. (Recently we found a plastic bag of her early orthotics, the tiniest with red Velcro and others changed to white.) We kept them on her at all times except during bathing, flexing exercises and bedtime.

Shortly before her second birthday, the orthopedist noted that the clubfoot was more awkward fitting into the AFO, and suggested we consider surgery. This was hardly her first – by now we had grappled with cataracts and worse – but this seemed more painful. The surgeon would have to break bones in her foot and reset them with a pin. Just the idea made my head swim.

By now the one constant was the anesthesiologist, a gentleman who lent us confidence. We also had faith in the orthopedic surgeon himself. But such a brutal procedure brought extra anxiety.

The waiting room had become familiar and we settled into our routine, reading and talking and looking at each other or off into space. This one took longer, but at last the surgeon emerged, still in his scrubs. The procedure had gone well.

Gabriella wore a cast from thighs to feet. She had been through so much, yet she smiled at us when we went to see her in recovery. Within days we took her home, and three weeks later they removed the pin – two inches long! – and changed her cast. I marveled at her resilience, still tiny but able to withstand such pain and disruption.

Even today, twenty years later, her feet retain their original profiles, the one with its curled toes and irregular bone structure, the other with the row of tiny purple veins and the flattened sole. But now, it’s their incongruity, their uniqueness, their imperfection, that makes them perfect in my eyes.