On a warm August morning in 2012, five years before my daughter died, Ana and I walked into the ER of our small community hospital. On that balmy summer day, I was convinced that Ana’s appendix was about to burst.
We’d only had to wait about forty minutes before Ana was triaged and we were led to a curtain-enclosed room where they did an ultrasound of her abdomen. The cold gel made Ana giggle. They said her liver was enlarged and it was obscuring her appendix, so they did a CT scan.
Two hours later, the scan revealed that the symptoms Ana had been experiencing all summer — weight loss, fatigue, irritability and stomach pain — were caused by a massive tumor sprouting from her portal vein and engulfing her liver. Details are fuzzy. I can’t remember the exact measurements of the mass, only that it was about the size of a grapefruit.
I stood outside of my daughter’s tiny hospital room, face in hands, and sobbed. Ana was eleven. Ana had cancer.
A nurse took my hand, gave me a tissue, led me to a chair (her chair), sat me down, and put a hand on my shoulder. “This is the beginning of a very long road,” she’d said. “Take a deep breath. Tell her it will be okay.”
The hospital smelled of antiseptic. The nurse had dark circles under her eyes. The wide halls filled with gurneys, equipment, and curved desks situated in odd places seemed harsh and intrusive. Everything was white or beige or brown. None of it was familiar. A long road? In a place like this? My heart ached. I was terrified, but I’d managed to stop crying. The nurse was trying to prepare me for what was coming. She was my first guide in a foreign place.
Ana was transported to a children’s hospital two hours away. I rode in the front of the ambulance while she drowsed in the back, exhausted and full of painkillers. The EMT tried to make small talk. “I had a tumor removed from my abdomen when I was a teenager,” she’d said. “Never came back.”
I knew she was trying to reassure me, but I was nursing a hot pit of dread in my stomach, a gut feeling that this wouldn’t turn out okay.
At the children’s hospital they put Ana in the pediatric oncology ward where bald children painted on bright construction paper, read dog-eared books, and stacked Legos in a playroom that was deceptively cheerful.
Ana had a private room. On that first night, my husband and I curled up beside her on a too-small couch. We listened to the beep of her I.V. We tried, and failed, to fall asleep.
The next morning an endless procession of healthcare professionals began marching into her room.
In my state of exhaustion and anguish, it was impossible for me to keep track of them all — nurses, social workers, nutritionists, the attending oncologist, the liver surgeon, the hepatologist, the pediatrician. They were a sea of faces with no meaning. I was “mom” without a name, powerless and shell shocked. Everything was unfamiliar and confusing. The environment of the hospital felt terrifying to me, particularly when they began doing procedures on Ana.
First, she had an MRI that required anesthesia. Next, she had a needle biopsy. When the biopsy results were inconclusive, she had a more invasive wedge biopsy and a port placed in her chest (preparation for chemotherapy.)
They checked Ana’s vitals every four hours, made her get out of bed and stand on a scale, and asked her constantly what her pain level was. She withdrew into herself, embarrassed by the attention, needing it to stop. She begged us to let her die.
After a week of standing aside and allowing them to do whatever they wanted without question, my fog of terror began to clear. I realized that to be an advocate for Ana, I had to restore some sense of control in her life. The only way I could do that was to understand the unique rhythm of the hospital, but even that wasn’t enough. I also had to embrace the language and cadence of its people.
That first hospital stay lasted for forty days. By the second week, I began to study everything going on around me. The hospital’s daily playbook was built around shift changes, morning rounds, scans, procedures and “patient focused” activities like meals and play sessions for the kids. Ana had no interest in any of it, despite the relentless pressure placed on her to comply. I began to wonder how much of it was truly necessary. I watched. I listened. And, as I did these things, that foreign place grew more familiar.
I observed an almost fanatical dedication to routine that didn’t always make sense (why weigh her every four hours?) It was as if the constant uncertainty and need to stave off death could be mitigated, somehow, by sticking to the hospital’s rituals without deviation.
They measured every drop of urine that came out of Ana, catalogued every ounce of weight she lost or gained, tracked every morsel of food that passed through her chapped lips, and above all, ensured she complied with every order written by the rulers of that place — the doctors.
Skipping any of these steps, no matter how seemingly arbitrary, tended to upset the staff. If I asked the maintenance person not to clean so that Ana could — for the love of god — get some sleep, a look of uncertainty would cross her face. She would leave reluctantly, shaking her head with concern as if a less-than-spotless room somehow invited chaos into this carefully constructed system of order.
“It’s okay,” I would say. “You can leave.”
Chaos had already arrived, after all. A mopped floor couldn’t protect Ana from the thing that was growing inside of her.
I learned the name of each nurse. I learned the role of every doctor. I advocated for Ana when she was overwhelmed, deferring shots, refusing to pull her out of bed for a weight check every four hours. I let her skip regular outings to the playroom without feeling any guilt.
Once, when a nurse yelled at Ana for being rude to me, I chased her out of the room and tracked down the head nurse. “She will not come near Ana again,” I said. “She yelled at a child who is in pain and has cancer.”
I looked the doctors in the eye and, in doing so, recognized that they were groping in the dark. Ana’s cancer was rare, its presentation extreme. There was no protocol for treating it beyond a liver transplant, but all of us wanted to try to shrink it first and save her liver.
I stopped feeling like a captive deferring power to some faceless kidnapper and became an active and unapologetic part of Ana’s care team.
We visited two more hospitals before moving Ana’s care to Columbia Presbyterian in Manhattan. Along the way we stopped at Sloan Kettering where a renowned pediatric oncologist and sarcoma expert told us that, no, Ana’s liver could not be saved. She needed a liver transplant, a ten-hour surgery that would literally split her in half. She got the transplant on February 5th, 2013.
The long road did not end with the liver transplant. Ana would be in active treatment for the next four years of her life.
I became comfortable in a hospital setting. I knew what to pack, what to ask the staff, and what to expect with each shift change.
I grew to appreciate the seeming lack of linear time, when all we could do was wait for a visit from the attending physician, the next test result or the holy Grail of every hospital stay — those glorious discharge papers.
Ana was never fully comfortable as a patient. How could she be? She went through puberty as a cancer patient, had her privacy stripped from her, and was in constant pain. She hated the hospital.
And, thankfully, Ana didn’t die there.
A team of dedicated palliative care specialists enabled us to keep Ana home during the final months of her life. We continued to advocate and care for her until she took her last breath on March 22nd, 2017.
I didn’t miss the constant trips into Manhattan — a drive that often took two hours or more one way, but I did — I do — miss what the hospital represented: hope. The missing is like a chasm in my psyche, an endless ache for my child who I can no longer reach.
No matter what you think about hospitals, they’re for the living. Walking away from that place of healing meant there was no way we could save Ana. After her final scan in January 2017, the sound of the hospital doors closing behind us punctuated the end of her long journey.
Two months ago a good friend of mine had a double mastectomy. She had the procedure in a hospital located just three miles from my house. The day after her procedure, I visited her.
I thought it would be triggering to walk into that place of controlled chaos, to smell its antiseptic smell, and to traverse the wide hallways to the place where the patients lay, recovering.
But I didn’t hesitate when I walked through the glass doors. I made my way up to the surgical recovery floor, a giant latte for my friend in hand, past the nurses’ station, and stopped at the door of her room which was open. “Can I come in?” I asked.
“Yes, I’m here,” she said.
I stayed with her for two hours and simply sat with my friend. We talked and laughed.
I came back the next day with another latte and we did the same thing. When I left the building after that second visit, I realized that the hospital had no power to scare me anymore.
To fear hospitals, you have to fear mortality. Not just death, but the inevitable march towards death; illness, infirmity, and aging. These things don’t scare me anymore. The hospital taught me how to truly advocate for my child and, in doing so, it became a familiar place.
It is difficult to be afraid of the familiar. When Ana was sick, I learned to recognize that there were Sherpas who could help me through the darkness and, eventually, I learned to become one myself.
These lightkeepers take different shapes. They reveal themselves when we need them most — like that careworn nurse who handed me a tissue, gave me her chair, and placed a calming hand on my shoulder after I received the worst news of my life.