On the day I met her for the first time, I heard her screams before I got to see her. She kept saying “Noooo! Noooo!” with a shrill voice that reverberated throughout the waiting area, just outside the clinic where I see pediatric neurosurgery patients on Saturdays. She contorted her body into grotesque curves and flailed her arms and legs in all directions with as much resistance as a four year old could muster, her family overwrought as they attempted to restrain her. There’s no need for that, I gestured to them, and I stayed a full meter away from my patient. Her eyes were fierce but they were filled with tears, and only after seeing both my hands held up did she stop, abruptly lying motionless like a rechargeable toy whose batteries had run out. The sobbing, however, persisted. Any other circumstance, she would have been dismissed by passersby as a spoiled brat. I knew that above all, she was just scared to see the doctor. Me. It was clear I would not be able to perform a neurologic examination that morning.
Ofelia had a brain tumor the size of a golf ball. Two months earlier she almost died when the tumor completely occluded the flow of her cerebrospinal fluid; the resulting acute rise in pressure inside her head caused her to stop breathing for a full minute. If it weren’t for emergency surgery to drain the excess brain fluid, her life would have ended that day. Luckily, she regained consciousness, and so after two days her attending neurosurgeon decided to convert the tube sticking out of her head into a more permanent diversion, a ventriculoperitoneal (VP) shunt. She was discharged fully awake, in time to celebrate her birthday, and not a month later, she was back to singing “Let It Go,” channeling Elsa as if all she had was a bout of viral tonsillitis.
Except she still needed brain surgery to take her tumor out. The shunt only addressed hydrocephalus, a symptom. The tumor would continue to grow if we did not do anything about it, and though we had a narrow list of possibilities, it would be unwise to do outright chemotherapy or radiation therapy without knowing what kind of tumor it was. Surgery offered Ofelia the greatest possibility of cure. I explained this to her mother, as her grandmother, uncle, aunt, and every other family member inside the clinic listened, periodically holding their breaths or nodding in unison.
When I asked why the patient wasn’t in the room, they told me the girl had developed a phobia of doctors and nurses. Her admission in the previous two hospitals had caused so much emotional trauma, no person in white could come near her, be it for blood extraction or vital signs monitoring. This wasn’t unusual, and not a first for me, either. Precisely the reason why I don’t wear my white coat in clinic or when doing rounds. After reviewing her CT scan and MRI films and deciding that it was indeed a resectable tumor, I stepped outside the room with her family, and that led to our first encounter, sans the human touch ever important to neurology clinicians. Her mother agreed to have the surgery done as soon as possible. That left me a little over a week to figure out how I would be able to examine my patient.
A considerable part of pediatric neurosurgery happens outside the operating room. After all, how do you tell children that you need to get inside their heads to take out a brain tumor? How do you convince a boy or a girl to lie still for few minutes, even endure an ounce of sharp pain, so that you could take off a wound dressing and inspect your post-op site? How do you break the news that they would not be allowed to watch cartoons on their iPad, hold their favorite toys, or see their friends for a few days after their operation? How much truth should you tell them, how much truth could they handle, and how much truth would they care about?
The first high five, fist bump, flying kiss, or freely given hug is always a milestone. The skill is in earning children’s trust without ever forgetting, or worse, compromising their vulnerability. It is a skill only acquired by reading their books, watching their films and TV shows, speaking their language, and playing their games—essentially reawakening your child self—something I have gotten better with through several years of treating children of all ages, but admittedly, have not yet fully learned. I have yet to have children of my own.
Even till the day I first operated on Ofelia, I could not come near her without eliciting a vile reaction. I had to settle with observing from afar as she interacted with her mother and family, paying close attention to how she grasped her plastic toys or stood up and walked to reach them. In the operating room, the pediatric anesthesiologist had to draw faces on a family of inflated hand gloves. It was Papa Glove, Mama Glove, and their four kids who put her at ease and convinced her to breathe through a transparent mask until she fell asleep from the anesthetic. The ingenuity brought relief to the neurosurgeon, too.
Over several hours, as Ofelia lay face down, unconscious and immobile, I excised her brain tumor. When she woke up in the recovery room, we made sure her mother was at her side. She did not seem to have any new neurologic deficit. If this were a feel-good story, I would have ended the narrative right there at that moment, with hugs, kisses, and maybe even sparkles, but this isn’t.
When you’ve operated on hundreds of your own patients and taken care of thousands of others, you become familiar with the sinking feeling you get upon seeing a sign—no matter how subtle—that heralds a surgical complication. It may be a one-point drop in consciousness level that nobody else noticed, a clumsy hand movement you catch from the periphery of your vision, a slight redness on one end of your incision, or any other exam finding prompted by a discomfort that your patient casually mentions as you are about to reach for the doorknob.
The reaction is instantaneous: your eyes lose fixation, you feel a pounding in your chest, and a bitter taste creeps from the back of your throat, as disbelief, denial, and dread hurtle towards you. Suddenly all you want is for everything around you to stop moving and keep silent, a time-freeze so you could sit down, process all information, and decide, without interruption, how to address the problem and what course of action is best for your patient. The answer to the latter is not always the easiest alternative for the surgeon, especially when you’ve already given yourself a pat on the back, previously thinking everything had gone well. Sometimes you just need a moment to sigh unnoticed, because in the next one you would have to explain to your patient’s family why and what to expect, at which point your gaze must not wander, your voice must not tremble, and your knees must not buckle. You do what you have to do.
Twice this happened to me while taking care of Ofelia, each instance just a few days before I thought she would be going home. Persistent fever, that was the first sign. The sight of cloudy cerebrospinal fluid aspirated from her VP shunt only confirmed what I had feared. She developed a surgical site infection and I needed to remove her VP shunt, otherwise the intravenous antibiotics we were giving her would be useless. And second, a mild limitation in eye movement and facial weakness I observed three days before she was supposed to complete her antibiotic regimen. I filled out her CT scan request form with a heavy hand; I knew what I would see on her images. The hydrocephalus recurred, and back to the operating room we went, this time to insert an endoscope and create an alternate route for her brain fluid.
“Nagkulang ata ako sa dasal sa batang ito (My prayers for this child must not have been enough),” I told her neurologist in frustration when we saw each other in the nurses station.
Complications notwithstanding, an unexpected good came out of these agonizing weeks, with long nights spent trying to figure out what more I could do to make her better. After her second surgery, a relatively short procedure, when Ofelia became lucid enough to talk to her mother in the recovery room, she made her first request. It was not to ask for food or water but, “Gusto ko kargahin ako ni Doc. (I want Doc to carry me in his arms.)”
I was next to her, writing my post-op note when she said this. I was surprised. Still, I put my blue pen down and obliged, and when I did, she pleaded, “Balik na tayo sa room. (Please bring me back to my room.)”
“Hala Doc, anong binigay ni’yo sa kanya? (Oh no, what medication did you give her?)” her mother teased, also perplexed at this spontaneous 180-degree turn in our patient-doctor relationship. She had to snap a photo to capture the moment.
From that day onward, it seemed all four walls of Ofelia’s fort had collapsed. Or at least, the gates were opened for me. Whenever I saw her in a bad mood during rounds at the end of the day, I would whisper to her with a cupped right hand, “Sinong nang-away sa iyo? (Who made you feel this way?)” and she whispered back her descriptions of the nurses who extracted her blood or reinserted her intravenous line. She told me the names of her toys and introduced her Disney princesses. She handed me paper money so I could buy miniature cakes and cans of soda from the play grocery she set up in her room.
Whereas before she had always sulked when I entered, refusing to even acknowledge my presence, now she welcomed me with a constant smile. If I came at the right time, she would set up her plastic dinnerware and we would dine together in her restaurant. It amazed the nurses and other doctors to see me carrying her along the hospital corridors when she hated to be touched by everybody else. I became my patient’s ally, confidante, protector, and I daresay, her favorite loyal shopper/diner.
In the days leading to her discharge from the hospital, after three surgeries that spanned almost two months, my child patient asked me repeatedly, “Sasama ka ba sa amin pauwi? (Are you coming home with us?)” to which I replied, “Bakit? Gusto mong sumakay sa kotse ko ‘no? (Why? Do you wish to ride in my car?)”
Indeed, we had come a long way from the screaming child and the doctor who had to hold up his hands in surrender. I was not completely certain what I did right.
As an outpatient, Ofelia completed a course of radiation therapy to prevent her tumor from coming back. Remarkably, she tolerated the daily procedure without any form of sedation. I praised her for her bravery and asked her to tell me what it was like. She got to celebrate Christmas and New Year’s Day with her family, and her three-month brain MRI came back negative for any tumor.
I was wrong to assume that the princess finally got her happy ending. Cancer can be a traitor, and it could not care less how old you are.
As innocuous as symptoms could go, this time it was back pain. Especially when walking. A week at the most. Vague is a lousy description, but that was the best one I could elicit as we sat in my clinic.
“Masakit ba ang ulo mo? (Do you have a headache?)”
She shook her head left and right.
I asked her to squeeze my fingers with both hands, try to kick while I push back her legs. There it was. Weakness. Minimal, but undeniable.
Once more, that sinking feeling I knew all too well.
I spoke to Ofelia’s neurologist after her visit and relayed my suspicion. A week later, an MRI of her back showed that the entire length of her spinal cord was covered in tumor, when her previous imaging studies and laboratory workups did not show any evidence of this at all. Her kind of tumor had two variants; the way it was behaving, hers was the more aggressive type. This time, I could not offer any form of surgery to help Ofelia without causing more disability. Why did every conceivable misfortune have to happen to this child?
Ofelia died ten months after I first met her, three months after we diagnosed disseminated disease, and a few weeks short of her and her mother’s planned migration to another country. They were merely waiting for Ofelia’s Visa. As fate would have it, the family had to prepare for a departure markedly different from what they had anticipated.
I was not ready, either. The day after she died, as I was about to start my car to leave the university-hospital complex where I worked, I received messages of gratitude from her family in my Instagram account, and they included, among others, a photo of the time she asked me to carry her in the recovery room. She must have been scared of all the monitor beeps, the hustle and bustle of patients being wheeled in and out, and I was someone familiar. She knew her doctor would not hurt her, and that would go down in memory as one of my proudest moments as a neurosurgeon.
I pulled a toy figure of Batman riding his Batmobile from the central console and rested him on the steering wheel. It was one of those toys you could get with a Jollibee kiddie meal, a token from Ofelia that she gave herself in a sealed brown bag. It dawned on me that I would never see her again in clinic, where each visit commenced with the little girl marching into the room with a giggle, after which she would hand me a sugary treat, usually a piece of chocolate, followed by the persistent question, “Kailan ka na pupunta sa amin? (When are you visiting our house?)” I was told every time she had a follow-up with me, Ofelia would wake up early, excited, as if she were visiting Disneyland. Once, her visit was heralded by a phone call, “Papunta na kami diyan, hintayin mo ako! (We’re coming today, wait for me!)”
In the driver’s seat, delaying my drive home, I grieved for Ofelia. I admitted to myself, I would miss her and her kakulitan. I wondered, too, why I was deeply affected by this loss. Would it have been preferable to have kept my distance all throughout, if that were even possible? I could only arrive at the conclusion that in my everyday attempt to earn her trust, in caring for her for almost a year, I allowed myself to be vulnerable, too. I suppose you could file this under work hazards when treating children.
Too often you read about patient testimonials stating how this doctor “changed my life forever.” The reciprocal is also true. Every patient interaction influences all others that come after, some just more than the others. Batman would never leave my car.
That last time Ofelia and I spoke, she was seated on her hospital bed, having dinner next to her mother. With a nasal cannula to supply oxygen and aid her breathing, she would not look up, seemingly more interested in playing with the morsels of food on her plate than talking to her doctor.
“Puwede ba akong bumili sa tindahan mo? (May I buy from your store?)” I asked, seeing all her plastic toys in the corner.
“Sarado na… (It’s already closed.)”
“Ha? Kailan magbubukas ulit? (When will it open again?)”
Tomorrow, as it turned out, meant never.