‘I’m always watching’: A mother’s vigil in Mexico’s cancer system

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Mexico City - Luisa Corral raises her hand slowly in front of her son’s face, moving one finger from left to right. Juan de Jesus, cradled in the crook of her arm, follows the motion instinctively with his left eye. When she repeats the gesture on the other side, there is no reaction. His right eye remains still. She tries again. Still nothing.

“I’m always watching,” the 24-year-old explains shyly. “I look to see if he follows my hand.”

She repeats the exercise throughout the day, instinctively looking for signs that the eye which doctors hope to save is still working and that the eye which does not, might somehow react.

Juan de Jesus, whom she calls Juanito, is eight months old. He has bilateral retinoblastoma - a rare cancer affecting both eyes. Doctors have already told Luisa that his right eye will have to be removed. There is some vision in the left eye, but doctors warn it may be lost despite efforts to save it.

Inside the lobby of the Mexican Association for the Aid of Children with Cancer (AMANC), Luisa sits on a wooden bench beneath a board listing the names, ages and home states of the children staying at the nonprofit’s shelter. On the walls, photographs of former patients show them smiling and playing. Luisa and other families wait in the hot, stuffy space to speak with a social worker who coordinates hospital visits, minibuses to the hospital, psychological services, sensory exercises for children, and other care. The nonprofit provides free accommodation and three meals a day.

Luisa’s son rests against her chest, feverish after a restless night.

“He didn’t sleep well,” she says, stroking his fine, damp hair. “He woke up several times with cold sweat.”

Alone in an unfamiliar city and unable to afford a taxi, she waited in their room in the shelter, hoping the fever would ease, until they could take the 7am minibus to see a paediatrician at the hospital.

“I kept looking at the clock. I was just waiting for it to be morning so I could take him to the doctor,” she says.

Holding Juanito before a statue of the Virgin Mary at the AMANC centre and shelter, Luisa studies her son’s eyes [Mark Viales/Al Jazeera]Luisa plays Juanito his favourite nursery rhyme, La lechuza (The Little Owl), as they wait to see a social worker [Mark Viales/Al Jazeera]Juanito sits on the bed in their room at the shelter as Luisa prepares to change him [Mark Viales/Al Jazeera]Juanito grips medication given to him by the doctor that morning following a night of fever and restlessness [Mark Viales/Al Jazeera]Luisa walks through the centre carrying Juanito in Mexico City, far from her home community [Mark Viales/Al Jazeera]arrow-right

When Juanito was about three months old, Luisa noticed a faint, translucent reflection inside her son’s pupil. Doctors later diagnosed retinoblastoma in both eyes.

Since the diagnosis, Luisa says she watches him constantly, relentlessly searching for the smallest change in his eyes or behaviour. The vigil is exhausting.

“I feel like if I stop watching him, I could miss something … and then it might be too late,” she says, her voice worn.

At 24, Luisa says numbly that this is not the life she imagined when she became a mother.

“I try to stay strong, but I still can’t believe what’s happening to him,” she admits, looking at Juanito. “I don’t think I’ve accepted it yet.”

Luisa makes the four-hour trip, changing buses three times, two or three times a month, from her village of San Juan de las Huertas to visit the hospital in Mexico City, where most paediatric cancer specialists are based. She stays up to a week while doctors carry out repeated eye examinations, tracking the tumours and deciding whether to begin more aggressive treatment, including chemotherapy.

The latter may begin in the coming months, meaning longer and more frequent trips to Mexico City.

“I don’t know how we’re going to afford everything that’s coming,” she says.

Luisa puts Juanito to bed in their room at the shelter [Mark Viales/Al Jazeera]Luisa puts Juanito to bed in their room at the shelter [Mark Viales/Al Jazeera]

Luisa used to work in a clothing store, but now looks after Juanito full-time while her husband, Ricardo Quintín, works as a delivery driver for a local auto parts shop, earning about 2,000 pesos ($112) a week. Each journey to Mexico City costs about 800 pesos ($45) in buses and taxis to and from the shelter, and then back home again.

Much of what Ricardo earns goes towards this transport, food, nappies and anything else Juanito might need, as well as utilities, groceries and any emergencies. Though they live rent-free in a one-room house owned by Luisa’s parents, money is always tight.

Although Luisa can stay at the shelter for free, longer stays bring additional costs - taxis when hospital schedules do not align with the AMANC centre’s minibus runs or when she is held up waiting for hours in overcrowded facilities, food during long visits, and necessities like nappies, baby formula and medication, all of which cost more in the capital.

“I try not to spend too much so the money lasts,” she says. “I just eat simply.”

When her husband accompanies her to appointments to support her, he sometimes misses work, reducing the family’s income further.

“I don’t like to ask my parents for money,” Luisa says quietly. “They already help us with a place to live.”

The surgery Juanito will eventually need - the removal of his right eye -  will be covered by Mexico’s public health system, as is much of his ongoing care. Private treatment is far beyond the family’s means, leaving them reliant on a system marked by long waiting times and complex administrative procedures.

After a paediatrician in her village urged her to seek further tests in Mexico City, Luisa waited several months for her son’s first appointment with a specialist in the capital. During those early visits, before being admitted to the AMANC shelter - which accepts patients through doctor referrals - she and Juanito stayed in a hotel near the hospital.

It was her first time in the city. Coming from a small rural village, she says she felt overwhelmed by its size - the noise, the traffic, the crowds - and was afraid to go outside. Most days, she remained in the room with her baby, leaving only when she had to buy food, supplies or make the journey to the hospital.

“I felt very alone, and everything was more expensive,” she says. “I didn’t know how I was going to manage.”

To make the money last, she skipped meals, focusing on what her son needed, something she and her husband still do in Mexico City when things are tight.

After learning about her financial situation, a doctor referred her to the centre. "It helped me a lot,” Luisa says. “I don't think we could manage otherwise."

Smiling and laughing, Luisa plays with her son and waves a bougainvillaea in front of his face, watching to see how her son's eyes track the flower [Mark Viales/Al Jazeera]Smiling and laughing, Luisa plays with her son and waves a bougainvillaea in front of his face, watching to see how her son's eyes track the flower [Mark Viales/Al Jazeera]

Luisa says the uncertainty of her son’s situation makes her anxious, and she tries not to think too far ahead, focusing instead on getting him to each appointment, even as she worries about being able to keep affording the journeys or what lies ahead for her son. She also needs to maintain up-to-date medical reports to access the centre, which may not always be available to them, depending on the referral doctor's decision and whether there is space at the shelter.

She worries about what Juanito's life will look like if his vision deteriorates - whether he will be able to play, go to school and move through the world as many other children do.

“It won’t be easy,” she says. “But I have to guide him so life isn’t difficult for him.”

Later, in the centre’s small garden, Luisa plucks a red bougainvillaea and waves it gently in front of her son’s face. He laughs when the petals brush his skin. When she shifts the flower to his right side, he does not react. She moves it back. Sweat gathers on his forehead from the fever. Luisa wipes it gently with her sleeve and presses a kiss to his skin.

His left eye follows the flower. She keeps her gaze fixed on him, rotating the stem slowly in her hand.

This story is part of a miniseries, Mothering on the Margins, exploring how five women around the world grapple with impossible circumstances to raise their children.

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