For seven years, Jenn Janosko cared for children with cancer on the ninth floor of New York’s Memorial Sloan Kettering hospital.
It’s the happiest sad place she knows.
The walls of the pediatric inpatient unit are covered in colorful children’s artwork. The floor curves in a circle: older kids do laps pushing their IV poles, while the younger ones trundle around on wagons.
There’s a playroom in which they hold themed events – bingo nights, slime nights, candy-cart nights – to inject some fun into a space otherwise sated with illness and death. One year Janosko, who worked as a nurse, dressed up as a blow-up cow to make the kids laugh.
The floor has its own soundtrack. There’s the ubiquitous beeping of machines: low battery alert, air in line, infusion complete. On a good day, it echoes with laughter and the chirping of little voices. Many other days there is crying, and sometimes screaming, as kids are held down to change their dressings or mediport needles.
The worst are the silent days, when a patient is approaching death. It’s when you brace yourself for what follows: the wailing of parents who have lost their child.
Janosko knew all these sights and sounds so intimately that last August, when she returned to the ward holding four-year-old Izzy’s hand, it felt like a homecoming.
Except this time, her own daughter was the patient.
Izzy had been diagnosed with the cancer every nurse on the ninth floor fears most: diffuse intrinsic pontine glioma, or DIPG. There is no cure, and the cancer is almost universally fatal.
The tumor arises in the brainstem, which controls critical functions such as breathing and heart rate. Surgery is usually impossible given the location, and the disease progresses with brutal speed with a median survival of 11 months.
Janosko took her child to their allocated room. She passed former colleagues who recognised her, some giving her hugs, others looks of pity. As she settled Izzy in, she could picture the faces of the kids she had nursed in the exact same bed, some of whom had succumbed on her watch.
Most parents have no idea what a DIPG diagnosis means. Janosko knew exactly: she was all too aware that the standard treatment of radiation and chemotherapy ultimately does not work.
The only hope for Janosko was to find a clinical trial that would offer Izzy the prospect of a few more months or years of life, or – if she dared to dream – even a glimpse of that elusive cure.
For the past four months, Janosko has chased that vanishingly small hope relentlessly. She has tracked down the 10 medical centers in the US offering the most promising clinical trials, calling again and again until she had to restrain herself, worried about causing irritation. Most trials had a long waiting list, while others were not a good fit for Izzy’s condition.
One, however, could have been a match: a clinical trial run by Izzy’s own neurosurgeon at Memorial. But a new hurdle emerged: the trial, which was ready to launch in cancer centers across the country, was abruptly called off.
Politics had intervened, Janosko was told.
The Trump administration’s dismantling of federal agencies has hit cancer research hard. It has led to budgets being slashed, grants canceled or delayed, while clinical trials – often the final hope for children with terminal illness – have been suspended or closed. Laboratories have imposed a hiring freeze on researchers and postponed orders for new equipment, and world-class scientists are seeking jobs in the private sector or abroad.
Izzy and children like her are suffering the consequences.
For the families involved, this means so much more than the cold budgetary figures cited in congressional debates or across news headlines.
“I know what DIPG does to kids,” Janosko said. “Eventually they can’t move, they can’t talk or smile or eat, they can’t see or hear, but their minds are fully intact. That’s the urgency.”
She put the reality facing her daughter starkly: “If I don’t find a clinical trial for my child, she’ll be dead in a year.”
The big funding freeze
The paradox is hard to miss. Trump’s bid to “Make America great again” is undermining an area in which America is already great – at the global forefront of the search for a cure for this disease.
Over the past 15 years, US medical centers have pioneered breakthroughs in understanding the genetic makeup of child brain tumors. American scientists, working with colleagues around the world, have expanded knowledge of the mutations that cause the tumors to grow.
Those advances have spawned new treatments targeting the cancers’ weak spots at a cellular level. The resulting clinical trials – many of them customized to target the vulnerabilities of each child’s own tumor – do not yet amount to a cure. But they do point towards the path forward. A very small, but potentially significant, number of children with DIPG are still alive several years into treatment.
Many of the greatest innovators in this space have been shaped by the American medical system, or have made their way here from across the world, drawn by its cutting-edge medical research. Despite their disparate roots, they share a common desire to save the lives of children. Neuro-oncologists and surgeons, microbiologists and biostatisticians have joined forces in a team effort that is the envy of other countries.
But science, even at its most altruistic, still needs funding. These cancers are so rare – about 5,000 children are diagnosed with brain tumors in the US each year, including about 300 with the deadly DIPG – that there is little profit incentive to lure big pharma. Federal money is therefore vital, but government support has been limited even during normal administrations.
Pediatric cancers are now the leading cause of death by disease for children in the US, with brain tumors being the most common. Yet child cancers get only 4-8% of the federal pie set aside for medical research into cancer generally.
Donald Trump has promised to “defeat childhood cancer once and for all”. On the frontlines of the disease, scientists and families say the opposite is unfolding.
How the country arrived here is no secret. The blueprint for the administration’s approach to scientific research was set out by Project 2025, a 920-page report compiled by the rightwing Heritage Foundation. It called for, in effect, the dismantling of the federal National Institutes of Health (NIH) as the world’s largest funder of medical research.
“The NIH monopoly on directing research should be broken,” the document says on page 462.
Trump appointed the architect of Project 2025, Russell Vought, as the government’s top budget official. In that role, he spearheaded the assault on the NIH, announced the “dramatic overhaul” of the agency, and blocked the release of billions of dollars of cancer research funding.
Then there was Elon Musk. Even before Trump’s inauguration, the tech billionaire was intervening in ways that would profoundly affect children with brain tumors.
A month before Trump returned to the White House, Musk used his own platform, X, to push a stream of falsehoods and help sink a bipartisan spending bill in Congress. A number of provisions that would have boosted funding for child cancer research were scrapped, including a voucher system that would have injected millions of dollars into experimental trials.
Within days of Trump’s inauguration, the White House imposed a funding freeze on all federal agencies, including the NIH. Hundreds of medical grants were cancelled, disrupting clinical trials for brain cancer, heart disease and other conditions that had been treating 74,000 patients.
The administration then shifted the goalposts on how federal research grants were distributed. Instead of the top 9% of peer-reviewed applications being approved, from now on only 4% would go ahead.
And in August, the Trump administration said it would withdraw support from North America’s oldest and most productive pediatric brain cancer research network – a group that has led the search for a cure for 25 years. All funding for the Pediatric Brain Tumor Consortium (PBTC), an alliance of 16 leading children’s hospitals in the US and Canada, will end in March.
Almost overnight, the decision brought many of the continent’s most promising clinical trials to a halt.
Children who were already participating in those trials would continue to receive care. But families like Izzy’s had a bitter pill to swallow: the experiments on which they had pinned their last hope would henceforth be closed to new patients.
A raft of closing trials
The Janoskos live in an idyllic lakeside house an hour’s drive north of New York City. When I visited last month, it looked like a holiday postcard: a light dusting of snow on the lawn, a large American flag flapping over the front porch. Inside, model trains and furry animals were scattered liberally over the living room floor.
Yet here was Janosko, amid this idealized vision of American family life, talking to me with tears rolling down her cheeks.
Occasionally, her face would betray a look of total and utter bewilderment. How was it possible, after so many years nursing children with brain cancer, that her own daughter had been hit by the disease?
“I just can’t make sense of it,” she said. “Was this my destiny forever?”
Years spent caring for gravely ill children had left Janosko so anxious about one of her own falling sick that, long before Izzy was diagnosed, she sought therapy.
Whenever a dark thought about her child contracting a terminal illness entered her head, she was encouraged to look at a square and think of something positive.
It didn’t work.
She continued having dire ideations for months before the discovery of Izzy’s tumor. She even found herself agreeing with other pediatric nurses that when you formed a family, it was best to have three children. That way, if one of them died, the survivor wouldn’t be an only child.
Janosko has three children, of whom Izzy is the eldest.
Then one day Izzy’s eyes began crossing themselves, and Janosko’s world imploded. Tests revealed a growing mass on her brainstem.
Dr Mark Souweidane, Izzy’s neurosurgeon at Memorial, designed a clinical trial during which tiny catheters are inserted directly into the brain tissue to channel high concentrations of therapeutic agents slowly into the tumor.
Early tests have been promising. Several children on the trial lived longer than three years, and three patients are long-term survivors. One of them is still alive 12 years on.
When Izzy was first diagnosed, it appeared that she would be a candidate for this novel drug delivery technique. Through the Pediatric Brain Tumor Consortium, Souweidane was only weeks away from launching an expanded trial across 12 medical centers nationwide.
Then the Trump administration closed the consortium, forcing Souweidane to call off the launch.
The other groundbreaking new treatment Janosko hoped to secure is called Car T-cell therapy. It works by extracting T-cells from a patient’s blood.
T-cells – the foot soldiers of the immune system – are then trained to recognise and attack specific proteins on the surface of the cancer cells. The repurposed Car T-cells are put back into the body and dispatched to the battlefield.
Janosko herself nursed the first children who had received Car T-cells for leukemia. She knows several of those pioneer kids who are still alive today.
Spurred on by the hope that the success of Car T-cell therapy in childhood leukemia might be transferable, Janosko has lobbied several leading medical centers that are applying it to DIPG.
At the time of my visit, however, every door remained closed to her.
A clinical trial at Texas Children’s Cancer Center has been suspended as a result of the consortium’s closure. She tried Stanford Medicine in California, and was told that the trial was taking only one new patient each month. And at Seattle Children’s hospital, she learned more than 50 kids were already on the waiting list.
Professor Sarah Leary, who runs the program in Seattle, said the hardest part of her job was turning frantic parents like Janosko away.
“I don’t consider it optional to offer research to these kids – I think every one of them should have that option,” she said.
She paused, tearing up. “I’ve been doing this for 20 years, and I still get emotional.”
After our interview, Janosko took me with her to pick up Izzy from school. The child emerged carrying a pink backpack. She hugged her mother, leaning heavily against her legs.
Izzy had a shock of golden curls cascading to her shoulders, tied with a red ribbon.
“That’s a pretty red ribbon,” I said.
“No, it’s not pretty,” she fired back, tired and annoyed by the presence of a stranger.
“No, I don’t want to say hello,” she corrected her mother.
Later that day, Janosko texted me a short phone video. In it Izzy, red ribbon still in her hair, looked into the camera and said: “Sorry I was grumpy. It was nice to meet you.”
Soon after I left, Izzy’s spirits had lifted. “I think her meds are making her more irritable,” her mom said. “I just wanted you to experience her cute side. But she’s four …”
The countercurrent against a cure
The back of Dr Eugene Hwang’s office door is covered in a montage of children’s photos. It’s the first thing he sees when he looks up from his desk – about 40 smiling faces beaming back at him.
“Every one of those kids is one of my patients who has passed away,” he said. “It’s a constant reminder. I want to be pushed to remember so I know how urgent this is.”
That urgency has inspired Hwang, a pediatric neuro-oncologist at George Washington University cancer center in Washington DC, to devote the past 15 years caring for children with brain tumors. He approaches every new child he sees with the ambition to cure them, or at least to prolong their life.
“Even when I think the chances of a patient being cured are low, the chances of them having more time than they would without treatment are high. That is the space in which we function,” he said.
Hwang led the PBTC’s working group on immunotherapy, and relished its power to move science rapidly forward thanks to “active critical discussion and collaboration”.
The idea behind the consortium was quite simple: “Get some of the best minds in the world, put them in a room together, and tell them you don’t leave until you’ve fixed it.”
The wind-down of the consortium leaves him deeply concerned about the future of science itself. So many potentially transformative experiments are ending.
“Where and how are we going to do this kind of science and research?” he asked.
Hwang’s own research has been grinding to a halt. He and Elias Sayour, a pediatric oncologist at the University of Florida Health, were working on devising a new treatment for DIPG.
Their approach involves an mRNA vaccine using similar technology to the Covid vaccine. It fires up the body’s immune system – it’s like hitting the nitro button on a racing car, Hwang said – then educates it to be able to recognise and attack a key mutation in the tumor.
Planning for the study was already showing exciting results. Tests on mice did not only shrink the tumor, they destroyed it altogether. A separate mRNA vaccine trial with adults had such a massive inflammatory immune response that it made patients sick, but there, too, no viable tumor cells remained.
There is no guarantee that the technology will work for children with DIPG. But in Hwang’s view, it is certainly worth trying.
A rigorous peer-reviewed process thought the same. It placed Hwang and Sayour’s proposal within the top 7% of grant applications – well within the 9% that had been the federal government’s official cutoff.
When the qualifying band was reduced to 4%, their hopes and ambitions were set back.
“It’s such a major task to walk these families through their darkest times,” Hwang said. “There’s so much uncertainty for them already, and now we have additional uncertainty causing a flight of talent from the research world, slowing the pace of discovery.”
Dr Souweidane, the neurosurgeon at Memorial Sloan Kettering in New York, whose groundbreaking catheter delivery trial Janosko hoped Izzy might join, has also been forced to postpone his plans. It’s one of seven cutting-edge clinical trials that have been closed to new patients as a result of the consortium’s demise.
Souweidane is baffled about what is happening to the march of science in the US. The search for a cure had been moving forward, now it’s receding.
“This goes against evolution. It’s like watching a countercurrent flowing against the evolutionary maturity of cancer therapy and cooperative group trials,” he said.
Leary, the Seattle children’s hospital doctor, helps lead several nationwide collaborative bodies for childhood brain cancer. She has noticed that several research laboratories across the country are facing hiring freezes.
Labs are where much of the heavy lifting is done to analyse the results of clinical trials. They are where some of the big questions are being tackled: why does a particular trial do wonders for 20% of kids, and not the other 80%? How can you tell in advance which kids will be in either cohort?
Federal funding cuts are eating into the capability of labs to answer such critical questions.
One of the stranger consequences of Trump’s new regime is that researchers now contort their language to avoid antagonizing the health secretary, Robert F Kennedy Jr, over his hostility to childhood vaccinations.
Both childhood vaccines and the experimental cancer vaccines rely on mRNA, a molecule that carries genetic instructions inside cells. But in human terms they are apples and oranges: one is designed to protect healthy children from viruses; the other is a last-ditch effort to keep dying children alive.
Advice is now circulating privately among top scientists working in many different cancer settings, urging them to avoid using the term “mRNA” in federal applications. Find other ways to say the same thing, the advice goes, so that you don’t risk being blacklisted.
I approached both the White House and the US Department of Health and Human Services. I asked them if they wished to comment about the apparent stark contrast between Trump’s pledge to defeat childhood cancer and the reality on the ground.
The HHS responded with a statement. “NIH continues to invest significantly in bold and innovative cancer research,” it said. “Ending the scourge of cancer is one of our highest priorities, as reflected in the National Cancer Institute’s (NCI’s) budget of more than $7 billion – the largest of any NIH institute or center.”
The director of the NCI, Dr Anthony Letai, also commented. He said that the NCI, which leads most US cancer research, spent more last year in extramural grants than in any previous year, and that “pediatric brain cancer research remains a high priority”.
He added that the decision to “pivot” away from the consortium had been made for “good logistical reasons”. PBTC trials would be enrolled in a new system “as soon as is feasible”.
For parents of children who potentially have just a few months left to live, “as soon as is feasible” is a hard sell.
As for the White House, a spokesperson asked for details of specific grants that had been cancelled leading to delays in cancer research.
I provided the information, but that was the last I heard from them.
No new patients
“She’s just a baby! She’s just a baby!”
Nikki Owens can still hear herself screaming the words after doctors told her that her daughter, Kinlee, had a brain tumor. Owens was 41 at the time. Kinlee was nine.
She remembers the moment viscerally – the shock, the disbelief, the sound of her own voice breaking free before she could stop it. Owens is a nurse herself, working with people with learning disabilities. Unlike Janosko, however, she had never heard of DIPG before a doctor delivered the news on 18 December 2024.
I met Nikki and Kinlee at the Downtown Aquarium in Houston, Texas, one of Kinlee’s favorite places. It was an emotionally fraught moment: the following day marked the first anniversary of her diagnosis.
During our visit, Kinlee sat in a wheelchair wrapped in a Lilo & Stitch blanket. Her hair was immaculately groomed and she had long manicured nails, but she was drowsy and her face was swollen from steroids. Because she could no longer blink with one eye, she wore a mermaid eyepatch. As we passed the tanks with giant stingrays and bamboo sharks, she momentarily perked up.
Strangely for an aquarium, there was also a tiger pacing nervously behind glass. The animal looked taut with pent-up energy, bursting to get outside. Owens carried the same tension, as if her body could barely contain the sadness and anger boiling inside.
“I’m pissed. That’s an understatement. I’m infuriated,” she said.
It was hard to grasp the extent to which cancer has changed Kinlee. Then her mother sat beside me and opened the photo gallery on her phone.
She showed me images of a healthy Kinlee dressed as a cheerleader, dancing to Footloose, fishing in the bayou, wearing a filigree white dress. She came across just as her mother describes her: “Quick-witted, sassy, full of one-liners. A busy, active, happy, sociable child. Definitely the life of the party.”
At first Kinlee was put on ONC201, one of very few new drugs for deadly child brain tumors to have been FDA-approved. But it made her so sick she had to stop taking it after just a few days.
Next, Owens was told her daughter qualified for two DIPG clinical trials, only to be informed that NIH cuts meant that neither was enrolling new patients.
Later, she turned to an innovative treatment developed by a biopharma startup called Flag Therapeutics. Its experimental drug, Flag 3, was showing promise.
Flag 3 also ground to a halt.
I contacted Frank Sorgi, Flag Therapeutics’s chief executive, to find out what had happened. He told me that he had created his startup after his wife died of the most deadly adult form of brain tumor, glioblastoma (GBM), in 2017.
That gave us a personal connection. My wife, Jessica Morris, also died of GBM in 2021. She had been a medical pioneer, too, having taken part in a number of experimental clinical trials during the five years she lived with the disease.
Sorgi explained that Flag 3 was a novel small-molecule therapy designed to target, bind and kill cancer cells while leaving normal healthy cells unharmed. Provisional lab tests have been remarkably successful.
But he hadn’t counted on Elon Musk’s bombardment against government spending in the days before Trump’s inauguration. The tech billionaire scuppered the voucher scheme that would have generated the investment Sorgi was relying upon to get started.
The loss of this funding stream forced Sorgi to cancel plans for a clinical trial. He is still trying to advance his novel drug, but has no idea how to pay for it.
It’s like, he said, “having to jump out of a plane without a parachute. I’ll just have to figure out the parachute on the way down.”
As for Owens, the multiple knockbacks on top of the trauma of Kinlee’s ailment have left her livid. “It’s like a slap in the face after being punched in the gut,” she said.
A month before Kinlee was diagnosed, she had joined millions of other Americans in the polling booths to vote for Trump. “Crazy I know, I voted for this man.”
She backed him, she said, because she liked his straight talking and had admired how he got things done during his first presidential term.
“He buttered me up, made me feel good. Then he turned around and betrayed me,” she said.
Betrayed?
“Oh absolutely. I voted for him without hesitation, then I watched as the dude went rogue. He’ll go and bomb the hell out of a country, blow it to smithereens at the cost of billions, then cut healthcare for children to save money. It doesn’t make any sense.”
A ray of hope
“She was the most courageous person I’ve ever met,” Mike Henry told me.
Mike and his wife, Kate, were both 36 when their daughter Blair was diagnosed with a rare and fast-growing brain tumor called ETMR. She was just shy of three. She died eight months later.
A month into chemotherapy, the Henrys were presented with a choice so brutal that their oncologist, a veteran with decades of experience, cried as she explained it.
“She told us it was a fork in the road,” Mike said. “Either we could handcuff Blair to this bed, pin her down to give her shots that made her sick, until she passed away in hospital … or we could spend the next few months with her at home, doing things she loved. We knew that if we decided to take her home, she would die.”
Ten days before her third birthday, they chose home.
Blair’s illness and death have transformed the Henrys’ lives beyond recognition. Almost six years later, they still devote themselves to finding a cure to pediatric brain tumors. It’s Blair’s legacy.
Kate is now an active member of a bereavement group working in the Philadelphia area. Mike is director of advocacy for the Pediatric Brain Tumor Foundation, a non-profit that offers family support, raises research funding, and pushes for government action.
His new vocation is to spare other families the disaster that befell his own.
Mike Henry used to work in public policy. That old life now gives him pause. In 2013-14 he was employed by Heritage Action, the political arm of the conservative Heritage Foundation that would, a decade later, go on to draft Project 2025.
A decade is a long time in conservative politics. Henry was at Heritage a year before Trump descended the golden staircase, and well before he had remodeled the Republican party in his image. Heritage was not as extreme then as it is today.
Still, Henry looks back on how he used to lobby for fiscal responsibility and smaller government, and ponders. Since Blair became sick, the way he perceives the role of government and the importance of caring for one another has changed drastically.
He knows now what he did not know then: that, in an instant, any one of us can be toppled from our lives and plummet to the depths.
“We had a great family, stable jobs, two wonderful children. We lost all of our savings in the first two weeks after the diagnosis. We were thrust on Medicaid, unemployment, then we lost Blair.”
Their freefall has made Henry a more empathetic person, he thinks. He understands that in America you can do all the right things, be an upstanding citizen, and still get chewed up and spat out.
“I see now that I was naive to the experience of others,” Henry said, “until I went through it myself.”
The foundation Henry works for is scrambling, alongside many other charitable groups formed by bereaved parents, to raise money to fill the void left by Trump’s cuts.
They can never compete with the vastness of federal funding, of course. But their voices and passion serve an important purpose: they send a message to politicians on Capitol Hill.
As Owens put it: “Giving in is not in our vocabulary.”
The same goes for Hwang. “My initial gut response was anger,” he said. But he has come to see that wallowing in it would only hurt the mission. He is determined to remain calm, present an optimistic face to worried families, and find a new way forward for his mRNA vaccine.
“If I thought that something was insurmountable, I would just go home. And that would be a disservice to these families and to these children.”
And there’s another reason not to give up. Every so often, a ray of light pierces through.
A couple of weeks after my visit, Janosko contacted me. She had news. Stanford had offered Izzy a place on its Car T-cell clinical trial.
“I’m petrified and I’m ecstatic,” she said.
Being the pediatric cancer nurse that she is, Janosko knows exactly what this entails. There will be anxiety aplenty, and possible side-effects. Izzy will shed her cornucopia of golden curls. The treatment might not work.
But for some, it does. One Stanford patient, Drew, responded completely – his tumor disappeared from brain scans and he is still clear five years on.
They signed the consent forms in Stanford on Monday. On Tuesday, Izzy’s treatment began.