My son Rakan was 5 years old when I first said the word “cancer” to a doctor. They looked at me the way doctors sometimes look at mothers, as if I were afraid of my shadow. It was allergies, they said. Gas. The ordinary explanations for an ordinary child. But I knew his energy was off. I knew my boy.
We were in Jordan for the summer when my husband noticed that Rakan’s spleen was protruding. My childhood pediatrician told us not to worry, to enjoy a few days at the beach, then get a CT scan. There was a cloud over the whole trip that none of us could name. We already knew, in the way parents know things their minds won’t let them say out loud.
Most CT scans take less than five minutes. Rakan’s took nearly an hour. I remember breaking down in that room. I remember a nurse holding me while I sobbed, telling me it would be OK. I remember the word “mass” being repeated, and not knowing what it meant, and yet knowing it was the end of everything.
Rakan fought his cancer, a rare form of pediatric kidney cancer known as diffused anaplastic Wilms’s tumor, with a ferocity that lives in me to this day. Multiple surgeries. Multiple rounds of chemotherapy. Radiation. But every time we took one step forward, the universe pushed us two steps back.
He died almost exactly one year after his diagnosis, at age 6, on the fourth floor of Children’s National Hospital in Washington, D.C., surrounded by the doctors and nurses who had become our family.
Afterward, I remember asking the doctor what we could have done differently. He said: We did everything we could. Only more research would get us to a cure for the tumor that killed my son. In the 10 years since, I have raised money for more cancer research and told Rakan’s story to anyone who would listen.
Here is what I need you to understand about pediatric cancer research: It is already the orphan of the oncology world.
The percentage of federal cancer research funding that goes toward childhood cancers numbers in the single digits. Treatment protocols for some pediatric cancers haven’t changed in decades.
The “popular” cancers — the ones with celebrity galas and pink ribbons and adult celebrity patients — get money and attention. The ones that take children languish. And yet around 15,000 children are diagnosed with cancer in this country every single year.
But what was already bad is now getting worse.
That path to curing pediatric cancers is closing. Not because we have run out of ideas or new treatments to try, but because the Trump administration made a choice to cut funding for pediatric cancer research and undermine the institutions that once made America the envy of the world when it came to health innovation.
In March, funding expired for the Pediatric Brain Tumor Consortium, a 26-year-old network that provides children access to experimental treatments. The following month, President Trump released his 2027 budget, which proposed cutting funding for the National Institutes of Health by 12 percent.
Already under this administration, we’ve seen a hollowing of support for research and science.
Last year, hundreds of National Institutes of Health research grants were canceled or suspended. And the agency continues to fund research at a much slower pace than usual.
A recent analysis found that as of late March, the National Cancer Institute had earmarked less than a third of what it would have for new grant funding by that point in a typical year under the Biden administration.
Researchers who would have been guaranteed funding in any normal year are being told there is no money.
