READING TIME: 4 MIN
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.”
I just read your last 4 posts and they were all compelling and extremely well written. Thank you for sharing your emotional journey and Gabriella’s life with us. I hope all is going well for you during this new phase of your life. You are missed at TIAA.
Thank you, Joe! I appreciate you continuing to visit the site and your friendship.