Facing Terminal Childhood Cancer, These Mothers Made an Impossible Choice

In the fall of 2021, Kate Hallward noticed her 11-year-old son Sam squinting. His right eyelid sagged, just a little — the kind of thing most parents would chalk up to fatigue. But when it lingered, she called the pediatrician. A neurological exam ended with an unsettling suggestion: schedule an MRI, just to be safe.

A month dragged by before they finally landed an appointment. By the time results came back, Christmas lights twinkled in their Berkeley neighborhood. Inside the hospital, Hallward and her husband learned about a mass on their son’s brain stem.

Doctors diagnosed Sam with diffuse intrinsic pontine glioma, or DIPG. Surgery was not an option. Radiation might buy him a few months, but the average survival rate is less than a year.

“It was totally stunning,” Hallward said. “I yelled at the doctor. I almost needed to be physically restrained.”

The news left Hallward and her husband with an impossible choice, one that thousands of parents of children with brain tumors face each year. Should they gamble on experimental trials that would tether Sam to a hospital bed, or go home and make memories?

Survival rates for DIPG have not budged in decades. The tumor hides in the brainstem, beyond the reach of surgery; and with only a few hundred cases each year, drug companies have little financial incentive to invest in treatments. Recent federal funding cuts have only widened the void. Mothers and fathers are left to decide how best to love a child unlikely to survive.

Shaken, the family flew to the East Coast to celebrate that Christmas with relatives, determined to pack the holiday with joy. Dog sledding. A magician who made Sam the star assistant. “You put on this smiley face when you’re basically crushed beyond crushed,” Hallward said.

Praying for a miracle

When they returned, some doctors told the family not to “chase rainbows.” Clinical trials, they said, were arduous for kids. Better to cherish the days they had.

For children with the deadliest cancer diagnoses, experimental trials are often the only possibility left — but the odds are slim. Fewer than 12% see any response at all, and less than 5% of drugs tested gain approval. By contrast, palliative care often helps children feel better day to day and spares them many of the grueling interventions that can dominate the final months. Yet, without families enrolling in trials, new cures will never be discovered.

“In the 1960s, essentially a pediatric cancer diagnosis was almost universally fatal,” said William Temple, UCSF pediatric hematologist-oncologist. “Nowadays, approximately 70% of those kids are now cured. That improvement is because of clinical trials in pediatric cancer.”

At first, Hallward was reluctant to enroll Sam in a trial, fearing hospitals would swallow their remaining days. Then she learned about CAR-T cell therapy, which reprograms a patient’s own immune cells to attack cancer.

Early results were promising: in one trial of eleven DIPG patients, several saw their tumors shrink, and one boy’s tumor vanished entirely. Nearly five years later, that child is still alive.

“Within hours of reading about the trial, I got him on the waitlist for the next arm of the study,” Hallward said. “I hoped against hope that there would be a breakthrough, just like every family does.”

When it was Sam’s turn to receive the treatment at Stanford, Hallward recalled that more than a dozen doctors and nurses crowded into his hospital room, eager to witness the infusion. Sam, ever the showman, seized the moment. From under his blanket, he pulled out a deck of cards and performed a magic trick, fooling even the lead researcher. The room erupted in laughter.

But within hours, the side effects hit hard. Sam suffered a severe negative reaction. He vomited and his fever spiked. By dawn, he was unresponsive. His brain swelled so severely that surgeons rushed him to the ICU, drilling into his skull to relieve the pressure. He spent 19 days there, hooked to monitors while his parents slept in chairs.

Slowly, Sam recovered from the treatment. For a few months, there were glimmers of normal life: a group of his middle school friends, nicknamed the “blubber seals,” stopped by. Card tricks. Family dinners. But the disease resumed its course. His legs grew unsteady. Forks slipped through his hands. His words began to slur.

“He lost his ability to talk from one hour to the next,” Kate said. “It literally just faded, and he couldn’t speak anymore.”

Sam died in Kate’s arms on Dec. 2, 2022.

Chasing joy instead

Nine years earlier in Charleston, South Carolina, Erin Benson faced the same devastating diagnosis but chose the opposite path. She was nine months pregnant with twins when she noticed her two-year-old son — also named Sam — start laughing strangely, and then one of his eyes stopped tracking.

The precocious redhead already carried a rare skeletal disorder that left him limping and scarred from surgeries. When an oncologist told her he had brain cancer, something inside Benson surrendered.

“Almost like a gut-level knowing that he wasn’t going to live a long life,” she said.

Her husband was ready to try anything. But Benson insisted their mission was to make Sam happy. With his medical history, she couldn’t bear to put him through more suffering. “For what, like a one percent chance?” she said.

Friends and strangers chipped in more than $100,000 on a crowdfunding site, enough to bankroll a year of wish-list experiences.

The family crammed into a minivan and drove to New York City, landing in Bryant Park during Fashion Week — strollers and diaper bags colliding with runway shows. At Disney World, they splurged on a special pass to skip every line. In Puerto Rico, Sam bobbed in the pool at the Ritz-Carlton.

“We were showmen, performing our greatest and most important act: the act of having fun while losing it all,” Benson wrote in a book about her son’s death. She confessed to her therapist that the charade was exhausting.

When the money ran out, they sought normalcy. The family moved into Benson’s aunt and uncle’s basement in Minnesota, grateful for the extra hands to care for three small kids. Sundays became family dinners. Sam raced his four-wheeler alongside neighborhood kids on bikes. One afternoon, his cousin taught him to pee standing up — and overnight, he was potty trained. Those were the tiny triumphs Benson treasures.

Sam lived two and a half years, far longer than expected. On his final night, Benson knelt beside his bed, squeezing his hand three times — their family’s code for “ love you.” She begged him: “What can I do to make you happy right now?”

Sam looked at her, almost bemused. “I am happy, Mom.”

Starved system shrinks

Both mothers carry the weight of their decisions. Hallward wondered if the medical odyssey was worth it. “There’s no good path,” she said. “All terrible options. It felt impossible not to try.” Benson wished she had poured her energy into ordinary milestones from the start, instead of globetrotting.

Now the options for families facing pediatric cancer have shrunk further. In August, the federal government cut off funding for a network of 15 hospitals that for more than two decades had coordinated research and trials for children with brain cancer, what’s called the Pediatric Brain Tumor Consortium, or PBTC.

The group was created in 1999 because, while survival rates for many childhood cancers had improved, outcomes for brain tumors had not. The consortium was meant to close that gap. But this summer, the National Cancer Institute told its leaders they could not apply for another round of funding. Enrollment in active studies was suspended. Families who had waited months for a spot in those trials were told to go home.

“It makes you want to throw up,” Hallward said. “Every day matters.”

The National Cancer Institute said resources would instead be folded into a pediatric cancer network with a wider research scope, known as PEP-CTN. But researchers warn that this may dilute attention and progress on brain tumors. “It’s certainly possible they won’t be able to dedicate as much of their efforts to brain tumors as PBTC has and that there will be fewer pediatric brain chemo clinical trials than there otherwise would have been,” said Ira Dunkel, chair of PBTC. “Currently, there are no options for new patients.”

Despite being the leading disease-related killer of children in the U.S., pediatric cancers receive less than 8% of the federal cancer research budget. Each cancer type is rare, patient pools are tiny, and enrolling enough children requires dozens of hospitals working in coordination. At the same time, the Trump administration has moved to cut billions from the National Institutes of Health, canceling grants and capping support for universities.

“Funding is hard to come up with, so you’re left with a rag-tag group of parents running nonprofits to keep things going,” said Benson, who founded one herself after Sam died. “But parents burn out. We don’t have the power to fix a broken system.”

Hallward has tried to channel her grief the same way. She supported a parent-led foundation that has funneled over $40 million into research. “That is the result of family after family doing bake sales and charity runs and tournaments, for years after losing their children,” she said. “This is not the model we should have. The government should be investing in the public good. And we all should be supporting a government that invests in the public good.”