Parents whose children have died from cancer are teaming up with scientists to study any correlations between toxicants and illness

Soccer was a huge passion in Oliver Strong’s young life. Right up to his death from acute myeloid leukemia in June 2015 at the age of 12, he was a standout athlete and goalkeeper, a healthy, vibrant and popular boy with a zest for living that inspired his teammates, friends and family.

So when Oliver died suddenly at a Miami children’s hospital, just 36 hours after doctors first diagnosed the disease, his parents Simon and Vilma started looking for answers. What they found was disturbing.

Cases of pediatric cancer in the United States surged by almost 50% from 1975 to 2015, according to alarming but under-reported statistics by the National Cancer Institute, and in 2018 up to 16,000 children from birth to age 19 will have received a new diagnosis.

Yet what really elevated the disquiet of Oliver’s parents was increasing concern over the role that carcinogenic environmental toxicants, including industrial waste and pollutants, were believed to be playing in the rise of childhood cancer.

“There’s almost an unspoken scientific consensus that it’s always environmental,” said Simon Strong, who with his wife set up Oliver Forever Strong – a foundation in their son’s memory.

Oliver’s Forever Strong has now teamed up for an ambitious research study with scientists at the Texas Children’s Hospital, home to the nation’s largest pediatric cancer center, and the Baylor College of Medicine.

Facebook Twitter Pinterest Simon Strong and Vilma Tarazona Strong lost their 12-year-old son, Oliver to pediatric cancer four years ago. Oliver’s parents have kept his room intact in their home in Miami Beach, Florida. Photograph: Maria Alejandra Cardona/The Guardian

Through the website thereasonswhy.us, the study will harness social media to help collate information from a wide geographical spread. Families with their own experiences of childhood cancers will sign up and receive a questionnaire in the coming months seeking information including the manifestation and progression of their cancers as well as demographics.

Dr Michael Scheurer, director of the childhood cancer epidemiology and prevention program at Texas Children’s Hospital, said: “[This research] … will allow families who might not live near one of the existing study centers to participate as they are comfortable.

“We realize individuals won’t know if they’ve been exposed to a certain chemical or specific agent so we try to gather an overview of their environment, where have they lived over the course of time, when the child was conceived, during mom’s pregnancy, during early childhood, up to the point they developed their cancer. Are those residences located near Superfund sites, or in areas with high levels of air pollution or water contaminants?

“In the end, if we see that several kinds of cancers share some risk factors that’s important information, but we want to start with a very homogeneous group of cancers and start looking into these patients first. Signposts will pop up along the way.”

Facebook Twitter Pinterest Oliver’s parents have kept his room intact in their home in Miami Beach Photograph: Maria Alejandra Cardona/The Guardian

Environmental factors

Strong says the hope is to eventually build a more detailed picture of the correlation between toxicants and childhood cancer.

“I, like most people, thought it’s just bad luck and dodgy genes, and you discover we’re quietly encouraged to think that,” he said. “[But] I found a paper published by the World Health Organization … it’s always triggered by external agents that damage our DNA and the body’s ability to deal with that damage.”

In his own son’s case, Strong admits to second guessing events in the months and weeks leading up to Oliver’s death, which came after a week of headaches.

Strong says he has no idea if it was any kind of factor in his son’s death but that he regrets using Roundup on their patio to get rid of weeds. “Oliver’s brother Edward said they both hated the smell of that stuff. [On one occasion] I looked at the container and saw glyphosate, and looked that up and saw it was declared a probable human carcinogen by the International Agency for Research on Cancer.

“And we all know now about the jury verdicts regarding glyphosate [three juries in the US have awarded damages linking the weed killer to cancer; Bayer its manufacturer insists it is safe and is appealing].

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Strong said someone had also told him about artificial turf and “the role it might be having in an apparently high level of childhood cancer”.

He said: “Look at the turf and the black spongy stuff that’s in it. It’s mostly diced up, used vehicle tires, it’s petrochemical stuff. There are strict regulations for the disposition of full vehicle tires, but nothing when it comes to dicing them up and using them as a spongy surface for athletes to play on.

“So I’d been exposing Oliver to Roundup, he’d been playing for six months as a goalkeeper on this stuff. I have no clue whether either contributed, but he was exposed to these two things and if I’d known better, I would have not exposed him.”

On a wider scale, Strong started looking at incidences and clusters of childhood cancer nationwide, and possible environmental factors behind them, which led to the foundation launching the thereasonswhy.us project.

“The International Agency for Research on Cancer’s raison d’etre is studying carcinogens in our environment, but in our health industry the focus is purely on detection, diagnosis and treatment, because that’s where the money is … and not focusing on prevention,” he said.

Facebook Twitter Pinterest Simon Strong and Vilma Tarazona Strong lost their 12-year-old son, Oliver to pediatric cancer four years ago. Photograph: Maria Alejandra Cardona/The Guardian

Cancer research funding cut by government

Privately-funded research will likely increase in importance as federal funding falls for tackling pediatric cancer, the leading cause of death in the US for children past infancy.

In February, Donald Trump announced a $500m appropriation over 10 years, compared to a seven-year, $1.8bn investment under Barack Obama. The president has also slashed environmental protections that Strong says has contributed to the “emasculation” of the Environmental Protection Agency (EPA).

There are tens of thousands of synthetic chemicals registered by the EPA but only a small proportion tested for toxicity, Strong says. “It’s in our foods, packaging and clothing, building materials, cleaning products, cosmetics, toys and baby bottles. And even less is known about the effects of simultaneous exposure to multiple chemicals.

“There are hundreds of communities across the country where people are raising their voices. In Otsego, Michigan, they had an extremely high number of pediatric cancer cases and managed to get the EPA to conduct air, water and soil studies. In most communities it relates to pollution as a result of toxic waste from active or defunct manufacturing plants of one kind or another, as well as run-off nutrients from farming operations.

“There’s a similar story in Franklin, Indiana. You have all these communities which are increasingly active on social media, coming into contact with each other and saying, ‘Hey, you too?’ Previously they were operating as pockets and wouldn’t have heard of each other. That’s where we are stepping in. We’re going to be bringing together many of those communities.”

Ultimately, Strong hopes to enlist thousands of families for the study, with the first 200 signed up by the middle of the summer. The questionnaire should be ready for distribution before the end of the year, and he said he had already signed up participants from almost half of the 50 states plus some in South America.

“Oliver was a compassionate, empathetic soul with a strong sense of justice, so I’d like to think we are doing this in his spirit, and at the same time it’s important for me that this not be about Oliver, it’s about all families who are affected by childhood cancer,” he said.

“We want society to be invested not in sickness but in health … celebrating young people preserving their health because we live in an environment with safer water, safer air and safer products.”