I Had To Choose Between My Daughter’s Cancer And Work

While my 8-year-old daughter puked yellow goo into a hospital bedpan, I couldn’t be a doting mother bent over her shivering body, rubbing soothing circles over her back. Instead, I spent long hours folded into a blue vinyl armchair, my fingers hovering over my laptop’s trackpad in case I needed to unmute my Zoom. As a single parent of two kids and our household’s sole income provider in a state with no paid family leave, I had to keep my mind on my job while my daughter’s body was ravaged by years of aggressive chemotherapy.

The U.S. is one of seven countries in the world that doesn’t guarantee paid family leave to new mothers, according to a 2023 World Policy Analysis Center report. Federal workers in the U.S. are given 12 weeks of paid parental leave when welcoming a child, but no paid leave to care for a sick family member. For nonfederal workers, leave policies are set at the state or even company level. The result is a patchwork leave system of varying amounts and durations with no consistency and no guarantees. Currently, just 13 states and Washington, D.C., have laws in place mandating paid family and medical leave for eligible workers.

These situations are often even more challenging for women, who disproportionately shoulder caregiving responsibilities. The Family Caregiver Alliance reported in 2012 that between 53% and 68% of caregivers in the U.S. are women, with two-thirds of those caregivers also employed full- or part-time, according to a 2004 National Alliance for Caregiving report. When comparing women’s labor force participation rates in the 15 countries with the largest gross domestic product per capita, the Department of Labor reported last year that the U.S. came in last, making us a global outlier. This comes at both an individual and collective cost.

In the days following my daughter’s leukemia diagnosis, I contacted my company’s HR department to ask about taking a leave of absence. I was told that because I was a Pennsylvania resident working remotely for a company in New Jersey, and because Pennsylvania does not have its own laws providing paid leave for its residents, I was only covered by the federal Family and Medical Leave Act. This would provide me with up to 12 weeks of unpaid, job-protected leave, but I would be responsible for paying my health insurance premiums if I wanted to maintain my family’s coverage.

“Or,” the company’s HR representative said, “you could continue working remotely.”

Forfeiting my income and our insurance at a time when we’d never needed them more was not an option. Throughout my daughter’s three years in cancer treatment, I continued working to the detriment of my mental health and my daughter’s care. “I shouldn’t be doing this right now” was my constant mental refrain through every monthly marketing meeting and every discussion of quarterly goals and weekly metrics. I held my daughter’s clammy hand off-screen and hoped my AI-generated office background wouldn’t glitch during my Zoom meetings.

I wanted to focus on my daughter. I knew she needed me completely, and I resented not being able to be there for her. I also knew I was doing the worst work of my life. I was dizzy with stress, and there was no reprieve. I volleyed between cancer, parenting and work, and with every breath in between I wanted to die. I imagined a hole opening up in the floor like the mouth of a whale — something that could swim up and swallow me whole so I wouldn’t have to keep up an impossible charade.

My income was going toward my daughter’s medical bills, which made the time I spent away from her feel especially pointless. A decade prior, we’d been achingly broke, surviving on food stamps and freelance income after my children’s father left. I’d worked my way out of my mother’s basement bedroom and into a small apartment, and I’d gotten a salaried job with benefits — all things I thought would move us forward. When my daughter got sick, it felt like we’d been thrown back into that desperate place. All the progress we made was snatched away over the course of an evening in our local ER, and we plummeted back within a short distance of the life I thought we’d left behind.

We were fortunate to receive some support from family, but we also pieced together resources the hospital social worker passed along. Insurance covered a portion of my daughter’s medical expenses, but there were dozens of partial or total denials that I’d have to appeal or cover myself. Filling out forms became a part-time job. I was constantly applying for assistance, trying to piece together funding to cover all of our needs. Private foundations would cover a utility bill one month and internet the next, but securing this assistance meant constantly filling out paperwork to request more help each time a bill was due.

Often I’d imagine throwing it all to the wind and taking the unpaid leave. “We’ll figure it out,” I thought. We’d do something. Then a spike of fear would drive through me, and reality would settle in like a stone over my chest: our insurance was dependent on my job. My daughter’s access to treatment — the thing tethering her to her life — was completely dependent on me. I couldn’t ever let my grip on things slip.

A study done by the National Institutes of Health in 2013 found that symptoms of psychological distress affect more than half of family members during their loved one’s critical illness. When a child is critically ill, the parents bear the brunt of the strain, which increases exponentially as parents attempt to balance their child’s illness with other responsibilities, including other children, their own self-care and the demands of their employment.

Eventually, I began drinking to cope. It started with a few glasses of wine when I wasn’t at the hospital and progressed until I was drinking a box of wine every night and waking up every morning to a purple-flecked sink and stained lips. My work performance sank even further, and the time I spent with my daughter in the hospital was muddy and exhausting. I was trying to stretch myself so many ways, and in the end I ripped myself to pieces.

In conversations around paid leave, a common argument is that employees leaving the workforce after having babies or when caring for critically ill family members weakens the workforce overall. But what of the individuals who stay working but are reduced to giving 20% to jobs they once gave 100%? That has its own drastic impact. We can’t go on pretending that keeping a warm body in a chair or on a screen is all it takes to fulfill the duties of employment. I was a skilled and enthusiastic employee before my daughter got sick. By the end of our cancer years, I was listless, exhausted and dispassionate. Eventually, I left the company altogether.

Paid family leave policies offer enormous support for working women. Research shows that new mothers who have access to paid leave are more likely to remain in the labor force and return to the same job, and I believe the same would be true for mothers who could access leave to take care of a sick family member. But companies also reap the benefits of paid leave policies, saving billions each year as turnover costs are reduced and employees with experience and expertise are retained.

Paid leave is becoming a leading issue this election season. Earlier this year, Paid Leave for All, MomsRising and Glamour magazine delivered a petition to Congress with 55,000 signatures advocating for a federal paid leave policy that would guarantee families time to care for their loved ones. During an August episode of “The Ezra Klein Show,” Democratic vice presidential nominee Tim Walz was asked what policy he thought should be passed that would make the biggest difference for people. He answered, “I think the paid family and medical leave. … It is so foundational to just basic decency and financial well-being … and I think that would start to change both finances, attitude — strengthen the family.”

During our cancer years, I often thought of a story my mother once told about my cousin: She’d said she’d seen black bears rummaging through her trash on the side of her home. “I keep thinking about if the kids were playing outside,” my mother said. “Which one would she save?”

“Which one would I save?” I’d ask myself. “My daughter or my job? My sanity or our stability?”

My daughter needed me when she was in cancer treatment. She needed me when she was throwing up into plastic hospital bedpans, as well as when the nurses accessed the port in her side with a needle the size of a hummingbird’s bill. Had there been a choice, I never would have continued to work while she was sick. I wanted more than anything to stay by her side.

She completed treatment on Nov. 6, 2022, 16 days before her 11th birthday. I recently asked her what she remembers of me from our cancer years.

“You were sad,” she said, “and tired. You were afraid I was going to die.”

I regret every moment I spent with my mind on my job. For three years I split my focus as cancer tried to pull my daughter out of my hands, and all the while I was haunted by the thought that I was wasting the last years of her life trying to meet the demands of a job for the sake of a paycheck.

Paid leave is about more than just economics. It’s about ensuring that every family has access to the support they need, regardless of their circumstances. My family is still recovering from the impact our cancer years had on us. We each struggle with varying degrees of PTSD, anxiety and depression, and while my children are entering into their teen years with wry wit and aplomb, I still feel like a hole was punched through me. It’s a wound I don’t know how to heal.

I should never have had to choose between my suffering child and my income. It is an impossible balance to strike. In 2024, in the United States of America, it’s a choice no one should ever have to make.

Elizabeth Austin’s writing has appeared in Thrillist, Reactor Mag, and Business Insider, among others. She is currently querying her first book, a memoir about getting sober after her daughter’s cancer years. She holds an MFA from Vermont College of Fine Arts and lives in Bucks County, Pennsylvania, with her two children and their many pets. Find her at writingelizabeth.com and on Substack at writingelizabeth.substack.com.

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