Part 2: Kids with brain cancer were already in a life and death struggle. Then came Trump.
By Ed Pilkington/The Guardian
Thu 15 Jan 2026 06.00 EST
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.”
Giving in is not in our vocabulary
Nikki Owens
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.
Thu 15 Jan 2026 06.00 EST
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.”
Giving in is not in our vocabulary
Nikki Owens
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.
