Eight days before my 12-year-old son Aryeh died from a rare form of brain cancer on March 23, 2023, he slipped into unconsciousness. The following afternoon, my husband and I had a long conversation about end-of-life steps with his dedicated pediatric oncologist at Shaare Zedek Medical Center in Jerusalem. I almost slipped off my chair from exhaustion. Later, I climbed into bed with my son and napped with him for two hours.
To our immense surprise, Aryeh woke up that evening after almost 24 hours of unconsciousness. Maybe he was faintly aware of my presence by his side. He lived another week, and during those days he was his inimitable self, chatty and smiley, although he was very weak and sometimes in pain.
Our last Sabbath together in the hospital was almost peaceful. On Friday night, we made the Sabbath blessing over a cup of grape juice together, and during the day, I read him “Just William” stories when he was awake. If I brought him a cup of water, I called it a “goblet” and addressed him as “m’lud,” and he replied, “thank you, milady.”
In retrospect, that “extra” week with Aryeh almost felt like an unexpected gift. In that time, we were able to talk together, laugh, hug each other, and discuss important questions. A medical clown named Zaza took him to the Jerusalem aquarium in her “clownbulance.” Our daughter, Aryeh’s twin sister, played foosball with him and with other children in the pediatric department at the hospital.
I think a lot about that “gift” of an extra week of Aryeh’s life, and I think about it now, when I read in the New York Times that the U.S. federal government is halting $4 million per year in funding to the Pediatric Brain Tumor Consortium (PBTC), an association of 15 academic centers and children’s hospitals founded in 1999. A notice on the website of the National Cancer Institute announced that the PBTC, which is dedicated to trials of novel treatments for pediatric brain cancer, will not be able to apply for another five-year funding award to continue its funding beyond March 2026.
According to the Times, the PBTC currently has six active trials; five are related to treatment. John Prensner, a pediatric neuro-oncologist at the University of Michigan quoted in the story, said that “these are early phase trials evaluating the safety and efficacy of novel therapies for pediatric brain cancers — mostly ‘the very highest-risk types’ of these cancers.”
My son had been diagnosed with a very rare, malignant, and aggressive type of brain cancer, APXA (anaplastic pleomorphic xanthoastrocytoma). From his diagnosis on March 10, 2022, he lived slightly more than a year. During that time, he endured three brain surgeries, multiple bouts of brain and spinal irradiation, several rounds of experimental medication, and numerous hospitalizations.
After each treatment, Aryeh said that he would bounce back: “I always do.” Tragically, no targeted medication exists for this type of tumor, because it is so rare and resistant to standard treatments. And so his ability to “bounce back” ended.
That is why early-phase trials conducted by the Pediatric Brain Tumor Consortium are so crucial for children with rare cancers. The PBTC’s mission is to “develop and carry out novel phase I, phase II, and pilot trials” of new therapies and “novel treatment delivery technologies,” in children aged up to 21 years with primary tumors of the central nervous system.
The Times notes that after two years of rigorous review, a trial was about to begin “for a neurosurgical procedure that would use tiny lasers to deliver heat and destroy tumors in the brain,” led by Mark Souweidane, director of pediatric neurosurgery at NewYork-Presbyterian Hospital/Weill Cornell Medical Center and Memorial Sloan Kettering Cancer Center. In speaking to the New York Times, Souweidane decried the loss of the PBTC, in which collaboration between researchers from different disciplines can lead to the cross-fertilization of ideas.
Because of the disbanding of the PBTC, children with rare brain cancers may be denied the chance to participate in trials of new and promising treatments, such as CAR-T cell therapy, a type of immunotherapy that “shows promise” for slowing tumor growth in glioblastoma, an aggressive and fast-growing brain cancer. Several patients lived 12 months or longer after receiving the experimental therapy; the median survival rate for recurrent glioblastoma ranges from six to 10 months.
In one clinical trial at Stanford Medicine, 11 patients with diffuse intrinsic pontine glioma, or DIPG, were treated with CAR-T cells. This rare brain cancer, in which malignant cells mix with healthy cells in key neurological structures, cannot be removed with surgery, and no effective chemotherapy options exist. Four of the patients in the Stanford trial saw their tumors shrink by half; one participant, named Drew, saw his tumor disappear from brain scans. Drew is still alive four years after his diagnosis.
In a study published in February led by Souweidane, researchers announced “hopeful” results from a Phase 1 trial that tested a novel drug delivery technique called convection-enhanced delivery for DIPG. This method bypasses the blood-brain barrier, which blocks chemotherapy drugs, by directly infusing drugs through a catheter into the brain tumor. Although DIPG typically has a survival rate of eight to 12 months, several children in Souweidane’s trial have lived for more than three years after treatment.
An extra six months, an extra year, a possible lifetime: That’s time that my talented 12-year-old son was denied. In his last months, Aryeh talked enthusiastically about starting middle school with his friends; about his upcoming bar mitzvah, which he began preparing for but didn’t celebrate; and about growing up to become a brain surgeon, “if I get better.”
And that’s extra time that kids facing similar diagnoses might have had, but probably won’t, thanks to a cruel decision to dismantle the PBTC. The Trump administration, which made the decision, proclaims its “pro-life” bona fides. It does not include children with brain cancer in its bloviated love of life.
Josie Glausiusz is a science journalist who writes for Nature, Scientific American, the Guardian, Bloomberg, and many other publications.
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