How Trump’s NIH cuts are a death sentence for our cancer-stricken son

One of the youngest victims of proposed cuts to the National Institutes of Health could be six-year-old Cailen Vela of Michigan, who has a rare and aggressive form of cancer scientists need funding to research. 

Cailen was diagnosed in November 2022 at a routine visit to the pediatrician, who at first believed the child had an ear infection when he noted a lump in the ear canal. 

A biopsy soon revealed another cause, however. Cailen had a rare type of tumor called embryonal rhabdomyosarcoma.

Diagnosed at four, the toddler endured chemotherapy and radiation to target cancer cells and shrink the tumor, but Cailen’s cancer relapsed last fall and required an 11-hour surgery to remove as much of the tumor as possible.

Currently, the Vela family — mother Aly, father Cody, and their infant daughter Alyssa— questions what lies ahead as the Trump administration continues to delay funding for biomedical research, jeopardizing scientists’ ongoing efforts to find cancer treatments for the disease plaguing Cailen and many others. 

And the Velas are worried about what proposed funding cuts for NIH-sponsored research could do to their chances of finding a viable, lasting treatment for their son. 

The Trump administration has stalled NIH funding by cancelling 42 out of 47 previously-scheduled NIH grant application meetings this week, a crucial step in awarding $47 billion each year for research on conditions like Alzheimer’s and heart disease.

The Trump administration has also proposed a 15 percent limit on indirect reimbursements for NIH grants, which provide financial support for costs such as  facility maintenance, administrative tasks, and compliance with federal regulations.

Cailen was diagnosed in November 2022 during a routine pediatric check-up, where the doctor initially suspected an ear infection. However, a biopsy revealed the devastating reality: Cailen had a rare tumor called embryonal rhabdomyosarcoma

Currently, the Vela family—mother Aly, father Cody, and their infant daughter Alyssa [not pictured]—worries about what lies ahead as the Trump administration continues to delay funding for biomedical research, jeopardizing scientists’ efforts to find cancer treatments

Funding from the government vary by institution, but they typically hover around 30 to 60 percent. 

Slashing those rates would leave universities, hospitals, and research centers with a substantial financial gap, forcing them to cut research programs, find alternative funding sources, or absorb the costs themselves.

Mrs Vela told CNN: ‘If the funding got eliminated or cut that would be devastating because these kids definitely need help in research. All the help — because there’s no real answers.’

Cailen’s treatment has relied on NIH-funded research and case studies of the past to better understand his cancer, of which there are only about 400 cases each year.

Embryonal rhabdomyosarcoma is a cancer that develops in the soft tissue and arises from muscle cells that have not fully matured. 

It most commonly occurs in head and neck regions, such as the sinuses, nasal cavity, and around the eyes but it can also develop in the urinary and reproductive organs

After Cailen’s biopsy showed cancer was present, the preschooler was referred to specialists at the University of Michigan and CS Mott Children’s Hospital in Ann Arbor.

It was there doctors decided to try proton therapy – hitting the tumor with beams of particles called protons – as embryonal rhabdomyosarcoma has no standard treatment protocol. 

The team in Ann Arbor worked with specialists an hour away in Royal Oak, Michigan, at Beaumont Hospital.

Doctors also researched the disease at a molecular level to better understand the rare cancer.

Cailen underwent chemotherapy and proton therapy, an advanced radiation treatment that uses protons to target and shrink cancer cells. After the first round of treatments, Cailen’s cancer relapsed last fall, requiring an 11-hour surgery to remove as much of the tumor as possible 

The first line of treatment for the cancer before it has spread to other parts of the body is chemotherapy and radiation, which has survival rates ranging from 50 to 90 percent.

The recent return of Cailen’s cancer last fall sent the family into chaos. When baby Alyssa was a newborn, the family took her to Ann Arbor and Royal Oak for Cailen’s first treatments. 

Doctors worked to remove the tumor from Cailen’s head for 11 hours and set him on a course of chemotherapy that will continue through June, as there could still be microscopic cancer cells that haven’t been detected yet. 

After Cailen’s relapse last October, the family has been forced to spend large periods of time apart. Alyssa has mainly been staying with her grandparents in as siblings usually aren’t allowed to stay overnight at the hospital. 

Chemo and a myriad of scans have left Cailen and his parents exhausted and their situation is expected to continue for the foreseeable future. 

Mrs Vela said: ‘It’s just been a lot, and we’re all tired.’ 

The NIH invests roughly $700 million to $1.8 billion in rare cancer research yearly, but that funding is now on the chopping block.

The latest missive from the NIH takes aim at the large portion of indirect costs shouldered by the government, which funds specialized equipment, labs, and support teams for research into rare cancers.

Cailen is on a course of chemotherapy that will continue through June, as there could still be microscopic cancer cells that haven’t been detected yet after surgery

According to the government: ‘Although cognizant that grant recipients, particularly “new or inexperienced organizations,” use grant funds to cover indirect costs like overhead, NIH is obligated to carefully steward grant awards to ensure taxpayer dollars are used in ways that benefit the American people and improve their quality of life.’

Cuts to indirect costs or more stringent regulations could impact research institutions’ ability to support infrastructure for studies and trials, potentially slowing down the development of new treatments or therapies.

Scientists and parents nationwide have been up in arms about proposed cuts to NIH funding. 

At the University of Notre Dame, home to 80 NIH-funded research projects, Dr Richard Taylor’s lab, which is developing chemical technologies to study their potential as treatments for rare cancers such as acute myeloid leukemia, is in danger.

He said: ‘While even the biomedical researchers who are most affected would agree that there are ways to improve operational efficiencies, slashing funding for the infrastructure of [the] country’s research and critical part of our scientific educational program is an error that will lead to damaging consequences to the engine that drives biomedical innovation in our country.’

The NIH invests roughly $700 million to $1.8 billion in rare cancer research yearly, but that funding is now on the chopping block

Meanwhile, a group of Tampa Bay, Florida parents part of the 1Voice Foundation, which is dedicated to supporting families dealing with childhood cancer, are traveling to Washington, DC, this week to fight for funding for pediatric cancer research, which was curtailed in December and faces even fiercer cuts.

Bonny and Scott Woodworth are among them, and have been going to DC for years to lobby for more funding to research cancers like the rare brain cancer that took their four-year-old daughter Tatum in 2012. 

Mrs Woodworth said: ‘We made some progress and we all had a lot more hope that the needle would move more, but it was very discouraging. Four different bills were cut at the end of last year that all affected childhood cancer research. 

‘So it makes it even more important that we go this year and that our voices are heard and we hope to get some of those things reinstated.’