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Cancer interrupted their school lives, but also set them on a mission

Published

1 month ago

December 8, 2024

Cancer interrupted their school lives, but also set them on a mission

At age 8 in 2009, EJ Beck hugs her favorite book, Laura Ingalls Wilder’s These Happy Golden Years. At 10, center, she is pictured in the hospital where she was treated for thyroid cancer. For Beck and her family, the Happy Golden Years image became emblematic of her life, before. At right, EJ Beck today is a 23-year-old medical student.

Beck family; José A. Alvarado Jr. for NPR

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Beck family; José A. Alvarado Jr. for NPR

EJ Beck was a bookish, wispy 10-year-old when a doctor found the thyroid cancer on her tiny neck that upended her life. Treatment for that cancer took Beck’s joyful school routine and replaced it with a complicated surgery, followed by a harrowing radiation treatment that made her so sick and radioactive, it required her to remain in a sealed chamber without human contact for many days.

Beck, along with her parents, had decided not to tell friends, her teachers or even her two younger sisters about her illness, hoping that might help her slip back into normal life, eventually. But in the short term, it intensified her isolation in the hospital, where she passed her solitary confinement rereading the Harry Potter series and drawing on a picture of Spiderman posted to the window.

“I was so, so jealous because Spiderman could just leave the hospital, and I couldn’t,” Beck recalls. “Spiderman got to take radiation, and he got cool powers; I got sick and sad and lonely and tired.”

Today, Beck is a 23-year-old medical student, and among a growing population of 18 million people who are surviving cancer for much longer, thanks to myriad recent advances like AI-powered tumor detection and new immunotherapies that chemically target cancers. Survival rates for pediatric cancer, in particular, are considered a crowning medical achievement: Those rates increased from 58% in the mid-1970s to 85% today.

Lourdes Monje, a young person with curly dark hair and glasses, sits on a bed next to a window. They are wearing a mauve colored dress and sweater.

But in order to get on with life after treatment, Beck also had to overcome many of the less-discussed aftereffects of cancer – notably the missed schooling and loss of identity and peer support that came with it, not to mention various other cognitive and physical impacts of treatment that deeply shape survivorship. Patients often feel forgotten when treatment ends, but research shows the knock-on effects, from mental health to financial challenges, can persist decades into recovery.

Out of step with peers

Today Beck is cancer-free, but says she still feels she lives in its shadow – quite literally, in the sense that her apartment is within earshot of the sirens near the New York City hospital complex where she received treatment as a child.

Also, the experience forged her into who she is, she says, and left her feeling scholastically, socially, and emotionally out of step with peers. “It takes a really long time to feel like you’re falling into sync with everybody else,” Beck says. “Even if you would make it on to college with everyone else, you kind of feel like you’re marching to a slightly different beat and you’re trying really hard to keep up.”

A close up of EJ Beck's hands with red fingernail polish holding a gold, sparkly ribbon is on the left. A portrait of her as an adult is on the right. She has long, brown hair and is wearing a blazer.

For many years, EJ Beck’s mother silently carried a golden ribbon that she received from the hospital to advocate for pediatric cancer awareness. “She passed the ribbon on to me,” says Beck, who has that ribbon hanging above her desk at home.

José A. Alvarado Jr. for NPR

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José A. Alvarado Jr. for NPR

When a child is diagnosed and undergoing treatment, doctors and parents tend to pour their energies – understandably – into managing the medical demands of pediatric cancer. But Julia Gomez, an education coordinator at NYU Langone Health, says for kids, the absence of the normalcy of school usually hits harder. “It’s quite devastating, to the whole child,” she says. “School is their whole world.”

With the increase in the population of survivors, there’s growing recognition that cancer care must also include planning for various aspects of life after treatment. And Gomez says more cancer centers, especially at research hospitals, are hiring education coordinators like her, who can help patients and their families stay connected to school during treatment and transition them back into their lives afterward.

Consistent support

Gomez works with some patients for up to five years, helping them and their families navigate the dizzying number of school or state bureaucracies to ensure students receive home tutoring or additional accommodations, for example. She matches them with tutors in the hospital or at home, and keeps teachers at school updated with treatment plans – tasks parents are often too overwhelmed to manage.

“I can offer myself to take on the whole academic-education-school piece,” she says.

Patient advocates argue specialized wraparound care like education coordinators should be an essential part of all pediatric and young adult cancer treatment plans. But they realistically are only accessible to a privileged minority of patients who live near the research hospitals or cancer centers that offer them.

Aside from those outside services, family engagement and support can have huge bearing on how children fare through treatment and survivorship, says Dr. Saro Armenian, director of the Childhood, Adolescent and Young Adult Survivorship Program at City of Hope Children’s Cancer Center in Los Angeles.

The more consistent, positive support a child feels from the adults and schools around them, the better they will maintain their self-worth through the grueling times, Armenian says. “The social network plays a huge role, especially as a child, when you really don’t have a guidepost for how you should behave and act in that situation.”

But even when children can remain in class or reintegrate back into school, they often feel marked by disease.

EJ Beck, for example, typically only missed morning classes through most of her treatments, but her highly restrictive, iodine-free diet meant she couldn’t eat school lunch, making her a conspicuous target for classmates. “I had this girl — I’ll never forget it,” Beck recalls, “she’d come up to me and say, ‘You’re really bullying everyone else because you’re so skinny and you’re dieting, so you’re saying that the rest of us are fat.’”

Beck swallowed her explanation to keep her cancer secret: “Once people know, they never look at you the same way.”

Still, she felt lucky, because she didn’t lose her hair — that telltale, dreaded side effect — which meant keeping cancer secret was an option for her. “I had the privilege of somebody who…cancer was never going to be as visible on me as it is on the majority of cancer patients.”

An abrupt departure from normalcy

Brendan Harley’s exit from school was far more dramatic and noticeable. On the evening of May 5, 1995 – the night before his SAT exams – Harley landed in the hospital with acute leukemia at age 17.

Brendan Harley home from the hospital in September 1995 after receiving a bone marrow transplant to treat his leukemia. “I was effectively living in a bubble at home,” Harley says.

Harley family

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Harley family

“I had to call my date for the junior prom, which was the next weekend, and say, ‘Sorry, I’m not going to be there’ – and I was then gone,” he says. He remained in the hospital, in treatment, or in isolation and away from school and friends, for a full year. Notably, this was in an era before cell phones and social media existed, so Harley’s isolation felt complete.

“I was effectively living in a bubble at home,” Harley says. His middle brother helped ferry homework to and from school. “I’d have a tutor that showed up once a week and we would set masks and gloves on different sides of the room and talk.”

It helped Harley to keep pinning his thoughts to discrete school assignments and other tasks he could control. Bald and tired, Harley studied frantically from his hospital bed, clinging to schoolwork as a handhold on life.

Often, things didn’t go to plan, as was the case with his chemistry finals: “I got out and went right to take my exams in June and I couldn’t remember any of the things I was studying because of all the chemotherapy.”

On May 5, 1995, at age 17, Brendan Harley was diagnosed with leukemia. The following day, he started chemotherapy treatments and spent a month on the oncology floor recovering at Brigham and Women’s Hospital in Boston. Now, as a biochemical engineer at the University of Illinois Urbana-Champaign, he’s developing better tumor models that improve targeted treatments

Harley family

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Harley family

But, says Harley, returning home after feeling so vulnerable made him more determined to live, fully. Driving home from the hospital with the trees having reached full bloom in his absence, he appreciated the vibrancy of color with fresh eyes – and saw his own life in the same light. “It was like I saw it for the first time; I’ve made it back,” he says. “To this day, I can’t forget.”

Vocations forged by experience

Three decades later, Harley’s cancer-free and a father of two. He now fights cancer on a different front. As a biochemical engineer at the University of Illinois Urbana-Champaign, he’s developing better tumor models that help improve targeted treatments to both kill cancer and improve the quality of life afterward. Harley says the cause of his own leukemia may be the earlier radiation and chemotherapy treatments he received at age 1, when he was diagnosed with a neuroblastoma. “How can I make it so that the next generation goes through something different?” he says of his career in cancer research.

Personalizing treatments can help avoid some of the harsher alternatives. “This idea of taking cells from a patient and turning them into a cure…that’s something that is incredibly motivating,” he says.

Meanwhile, EJ Beck is on her own revenge tour against cancer. This fall, she started medical school at NYU Langone, the very hospital where she’d received treatment as a 10 year old. Walking through the same doors as a physician in training felt like the bookend that made her whole life story make sense. “I almost feel like I can see the younger version of myself standing next to me in such a different place in her life,” Beck says.

EJ Beck is shown in her white medical coat. She has a bright smile on her face.

EJ Beck is now pursuing a medical degree at the same hospital complex where she received treatment as a child. “Sometimes it feels as though I’ve lived lifetimes since then, and it hurts to think about,” she says “But mostly they just make me feel immense gratitude for where I am now – I’m incredibly blessed.”

Beck family

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Beck family

What cancer stole from her childhood, she’s now reclaiming. “It was extremely identity-forming to me. It helped me understand people’s pain more and gave me a mission that I’ve carried with me in life to become a physician who gives back to a field that’s given me so much.”

Original photography by José A. Alvarado Jr. Visuals design and editing by Katie Hayes Luke.
Audio and digital story edited by Diane Webber.

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Tulsa Massacre Was a ‘Coordinated, Military-Style Attack,’ Federal Report Says

Published

2 hours ago

January 11, 2025

Press Room

Tulsa Massacre Was a ‘Coordinated, Military-Style Attack,’ Federal Report Says

The Tulsa Race Massacre of 1921, in which a prosperous Black neighborhood in Oklahoma was destroyed and up to 300 people were killed, was not committed by an uncontrolled mob but was the result of “a coordinated, military-style attack” by white citizens, the Justice Department said in a report released Friday.

The report, stemming from an investigation announced in September, is the first time that the federal government has given an official, comprehensive account of the events of May 31 and June 1, 1921, in the Tulsa neighborhood of Greenwood. Although it formally concluded that, more than a century later, no person alive could be prosecuted, it underscored the brutality of the atrocities committed.

“The Tulsa Race Massacre stands out as a civil rights crime unique in its magnitude, barbarity, racist hostility and its utter annihilation of a thriving Black community,” Kristen Clarke, assistant attorney general for civil rights, said in a statement. “In 1921, white Tulsans murdered hundreds of residents of Greenwood, burned their homes and churches, looted their belongings and locked the survivors in internment camps.”

No one today could be held criminally responsible, she said, “but the historical reckoning for the massacre continues.”

The report’s legal findings noted that if contemporary civil rights laws were in effect in 1921, federal prosecutors could have pursued hate crime charges against both public officials and private citizens.

Though considered one of the worst episodes of racial terror in U.S. history, the massacre was relatively unknown for decades: City officials buried the story, and few survivors talked about the massacre.

The Justice Department began its investigation under the Emmett Till Unsolved Civil Rights Crime Act, which allows the agency to examine such crimes resulting in death that occurred before 1980. Investigators spoke with survivors and their descendants, looked at firsthand accounts and examined an informal review by the Justice Department’s Bureau of Investigation, the precursor to the F.B.I. In that 1921 report, the agency asserted that the riot was not the result of “racial feeling,” and suggested that Black men were responsible for the massacre.

The new 123-page report corrects the record, while detailing the scale of destruction and its aftermath. The massacre began with an unfounded accusation. A young Black man, Dick Rowland, was being held in custody by local authorities after being accused of assaulting a young white woman.

According to the report, after a local newspaper sensationalized the story, an angry crowd gathered at the courthouse demanding that Mr. Rowland be lynched. The local sheriff asked Black men from Greenwood, including some who had recently returned from military service, to come to the courthouse to try to prevent the lynching. Other reports suggest the Black neighbors offered to help but were turned away by the sheriff.

The white mob viewed attempts to protect Mr. Rowland as “an unacceptable challenge to the social order,” the report said. The crowd grew and soon there was a confrontation. Hundreds of residents (some of whom had been drinking) were deputized by the Tulsa Police. Law enforcement officers helped organize these special deputies who, along with other residents, eventually descended on Greenwood, a neighborhood whose success inspired the name Black Wall Street.

The report described the initial attack as “opportunistic,” but by daybreak on June 1, “a whistle blew, and the violence and arsons that had been chaotic became systematic.” According to the report, up to 10,000 white Tulsans participated in the attack, burning or looting 35 city blocks. It was so “systematic and coordinated that it transcended mere mob violence,” the report said.

In the aftermath, the survivors were left to rebuild their lives with little or no help from the city. The massacre’s impact, historians say, is still felt generations later.

In the years since the attack, survivors and their descendants and community activists have fought for justice. Most recently, a lawsuit seeking reparations filed on behalf of the last two known centenarian survivors was dismissed by Oklahoma justices in June. In recent years, Tulsa has excavated sections of a city cemetery in search of the graves of massacre victims. And in 2024, the city created a commission to study the harms of the atrocity and recommend solutions. The results are expected in the coming weeks.

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The strange world of the Euro-Gulf

Published

3 hours ago

January 11, 2025

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Waiting for the Tube, I see a poster for an upmarket gym chain. Locations? “City of London. High Street Kensington. Dubai.” What a shame to choose a setting that is so disfigured with bad taste and clueless expats. Still, the City and Dubai branches must be first-rate.

Soon after, I am in Doha, and again the Euro-Gulf linkage is inescapable. The emir of Qatar is back from a state visit to Britain, where the hosts were angling for a trade deal. Swiss-headquartered Fifa has just given the World Cup hosting rights to Saudi Arabia. Even in skyscraper-free Muscat, where alleys that might have been rationalised elsewhere in the Gulf twist freely behind the corniche, three restaurants in my hotel are outposts of Mayfair brands.

What a shame the word “Eurabia” is taken. And by such cranks. (It is a far-right term for a supposed plot to Islamise Europe.) Because we are going to need a word for this relationship. The Arabian peninsula has what Europe lacks: space, natural wealth and the resulting budget surpluses to invest in things. For its part, Europe has “soft” assets that Gulf states must acquire, host or emulate to carve out a post-oil role in the world. This isn’t the Gulf’s deepest external connection. Not while 38 per cent of people in the UAE and a quarter in Qatar are Indian. But it might be the most symbiotic, if I understand that word correctly.

True, the US has a defence presence in all six Gulf Cooperation Council states. This includes the Saudi footprint that Osama bin Laden wasn’t super-stoked about. But everyday contact? America is a 15-hour flight away. Its soft assets are either harder to buy or less coveted. Its citizens have little fiscal incentive to live in tax havens, as Uncle Sam charges them at least some of the difference.

In the 1970s, when Opec profits gushed through London, Anthony Burgess wrote a dystopia in which grand hotels became “al-Klaridges” and “al-Dorchester”. What a mental jolt it was for even the worldliest Europeans to see — we mustn’t pussyfoot around this — non-white people with more money than them. Still, they could condescend to the Gulf as being no place to live. Half a century on, their grandchildren would call that copium. In fact, their grandchildren might literally live there for economic opportunities. (Al-Dorado?) As a banker friend explains it, the time zones allow you to sleep late, trade the European markets, then dine late, so it is the young ones who do a Gulf stint, not the burnouts who are my age.

For how long, though? It is the sheer unlikelihood of this tryst, between a universal rights culture and monarchical absolutism, between a mostly secular continent and the home peninsula of an ancient faith, that distinguishes it from anything I can think of. A relationship can be both necessary and untenable. It wouldn’t take much — some intra-GCC violence, say, which seemed close in 2017 — for Europe’s exposure to the Gulf to age as badly as its former openness to Russia. If Abu Dhabi-owned Manchester City are found to have committed financial chicanery, a chunk of Premier League history will be tainted. Because it is “just” sport, I sense people are underprepared for the backlash.

And it is parochial to assume that the relationship could only ever break down on one end. It is the Gulf side that has to make the awkwardest cultural adjustments. Because Europeans associate 1979 with Iran and perhaps with Margaret Thatcher, they sometimes pass over the seizure of the Grand Mosque in Mecca by zealots who thought the House of Saud had grown soft on western habits. Governments in the region assuredly don’t forget.

How far a place can liberalise without tripping a cultural wire occupies (and is answered differently in) each state, or emirate. Everyone is very nice to “Mister Janan” in his Doha hotel. But the metal scanners that must be passed on each re-entry to the building stand as a reminder of the stakes here. I wonder if Europe and the Gulf throw so much into their liaison out of a niggling doubt that it can last.

Email Janan at janan.ganesh@ft.com

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Fox News headed for trial, again, over 2020 election fraud claims

Published

4 hours ago

January 11, 2025

Press Room

Fox News headed for trial, again, over 2020 election fraud claims

Fox News appears headed for trial over false election fraud claims made after the 2020 election, after a New York state appellate court chose not to dismiss a lawsuit brought by voting tech company Smartmatic.

Spencer Platt/Getty Images/Getty Images North America

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Spencer Platt/Getty Images/Getty Images North America

Fox News appears to be headed once more to court over the lies involving election fraud it aired about the 2020 presidential race. This time, it’s over the false claims that election tech company Smartmatic sabotaged the re-election of then-President Donald Trump.

In April 2023, on the eve of a trial in Delaware in which Fox founder Rupert Murdoch was set to testify, the network and its parent corporation agreed to pay $787.5 million to settle a defamation suit filed by Dominion Voting Systems.

Fox News settles blockbuster defamation lawsuit with Dominion Voting Systems

A flood of revelations from the pre-trial process of discovery yielded damning internal communications. The judge found that network figures from junior producers to primetime hosts, network executives, Murdoch and his son Lachlan knew that Joe Biden had won the election fairly. Yet, they allowed guests to spread lies that Trump had been cheated of victory to win back Trump viewers. Some hosts amplified and even embraced the claims.

Now, an appellate court ruling in New York state is allowing Smartmatic’s parallel, $2.7 billion suit to press ahead. The same ruling also dismissed some counts against the network’s parent company, Fox Corp.

Pro-Trump Fox hosts including Maria Bartiromo and the late Lou Dobbs invited guests making unsubstantiated and wild claims about Smartmatic on the air, and at times appeared to endorse those allegations themselves.

Fox forced Dobbs off the air just a day after Smartmatic filed its suit in February 2021. Two weeks later, Fox News and Fox Business Network ran an awkward segment with a voting tech expert, Edward Perez, to present viewers with a rebuttal to those outlandish claims. Newsmax, a right-wing channel in competition with Fox for viewers who supported Trump, did much the same.

“Today, the New York Supreme Court rebuffed Fox Corporation’s latest attempt to escape responsibility for the defamation campaign it orchestrated against Smartmatic following the 2020 election,” Smartmatic’s lead attorney, Erik Connolly, said in a statement. “Fox Corporation attempted, and failed, to have this case dismissed, and it must now answer for its actions at trial. Smartmatic is seeking several billion in damages for the defamation campaign that Fox News and Fox Corporation are responsible for executing. We look forward to presenting our evidence at trial.”

Unlike Dominion, whose voting machines were used in two dozen states, Smartmatic says its technology was used only in Los Angeles County in 2020. Fox has sharply questioned the value of Smartmatic and the contracts it says were jeopardized and lost.

“We will be ready to defend this case surrounding extremely newsworthy events when it goes to trial,” a network spokesperson said in a statement. “As a report prepared by our financial expert shows, Smartmatic’s damages claims are implausible, disconnected from reality, and on their face intended to chill First Amendment freedoms.”

In the Dominion case, Fox also relied on arguments that its shows and hosts were simply relaying inherently newsworthy allegations from inherently newsworthy people — the then-president and his allies. The presiding judge in Delaware, Eric M. Davis, rejected that argument; he found that Fox’s executives, stars, and shows had broadcast false claims and defamed Dominion in doing so.

Fox has said that the New York case offers a new venue, with slightly different implications, although Davis applied New York defamation law in his Delaware proceedings.

Fox settled, as it has in many other cases, before opening arguments of the trial with Dominion. It maintains it will fight the allegations Smartmatic is making in court.