Oliver Strong, 12, had complained of headaches over several days. A doctor confirmed a diagnosis: Acute Myeloid Leukemia (AML). Oliver died 36 hours later. “In torment,” his father Simon recalls, “we asked the oncologist what caused his illness. She replied amid her own tears: ‘It's the environment.'”
Strong and his wife, Vilma discovered that between 1975 and 2015 cancer increased by 48 percent for people under age 20. Now, their foundation, Oliver Forever Strong, is partnering with researchers at Texas Children’s Hospital and Baylor College of Medicine in a landmark study “The Reasons Why Us” to identify the causes of childhood cancer. So far, 400 families have joined and the Strongs are asking others impacted by childhood cancer to participate.
Read MoreThe Goal: Childhood Cancer Prevention
"We hope to obtain significant data from a large number of families on a shorter timeline," said Dr. Michael Scheurer is a professor of pediatric hematology-oncology and co-director of the Center for Epidemiology and Population Health at Baylor, who adds that the study’s goal is to prevent pediatric cancers from occurring in the first place.
“We need to widen society's focus on detection, diagnosis and treatment [of cancers] to assertively embrace prevention,” he said, adding a primary goal is to better understand the environmental toxicants that trigger the disease. (A toxicant is defined as a man-made environmental threat, whereas a toxin — like poison ivy or snake venom — occurs naturally.)
The symptoms of acute myeloid leukemia (AML) can be subtle, says Dr. Mikkael Sekeres, Director of the Leukemia Program at Cleveland Clinic Cancer Center.
What Is Acute Myeloid Leukemia?
AML is essentially a cancer of the white blood cells, says Dr. Mikkael Sekeres, Director of the Leukemia Program at Cleveland Clinic Cancer Center.says, so it can lead to a handful of non-specific symptoms that are similar to those of the flu. "Something like acute myeloid leukemia causes very high white blood cell count,” Dr. Sekeres says. "The high white blood cell count occurs because there's a cancer in the bone marrow that causes the white blood cells to grow."
RELATED: Advancements in Treating Acute Myeloid Leukemia (AML)
Dr. Sekeres notes that some of the symptoms that go along with that are fatigue, fever, and a loss of appetite. A person who has AML's blood work can return with a white blood cell count that's 20X the normal number, and a red blood cell (or hemoglobin) count that is much lower than normal. This low hemoglobin can lead to fatigue, while a low platelet count may lead to symptoms such as nose bleeds, bruising or bleeding in the gums when brushing their teeth.
What’s Next in Childhood Cancer
Because of treatment advances in recent decades, 84% of children with cancer now survive five years or more, according to the American Cancer Society. This is up from 58% from the mid-1970s. But when it comes to treatment for childhood cancers, doctors still rely on chemotherapy.
“There are also targeted treatments and different immunotherapies that have been studied in adults and have now moved into clinical trials for children and there has been a great deal of excitement in the community about that," Dr. Elizabeth Raetz, Director of pediatric hematology and oncology at Perlmutter Cancer Center, tells SurvivorNet.
Sarah Stapleton, a clinical social worker at Montefiore Medical Center says social workers can connect patients with resources and provide support during the treatment process.
According to the National Pediatric Cancer Foundation, in the U.S., only 4% of the billions of dollars spent each year on cancer research and treatments are directed towards treating childhood cancer. This funding lag has a ripple effect: Since 1980, fewer than 10 drugs have been developed for use in children with cancer while hundreds been created exclusively for adults.
In addition, the organization notes, most survivors of childhood cancer will have a significant health-related issue by the time they reach age 45, often a side-effect of treatment. Even more discouraging, since 1980, fewer than 10 drugs have been developed for use in children with cancer, compared with hundreds that have been created exclusively for adults. And pediatric cancer treatment is expensive: The average cost of a stay in a hospital for a child with cancer is $40,000.
Childhood Survivors Face Heart Risks
According to a 2019 study published in the journal Circulation, even at a young age, childhood cancer survivors are three times more likely to develop any type of heart disease than their peers. The heightened risk of heart disease among childhood cancer survivors is a result, in part, of the "cardio-toxic" nature of many of the most effective cancer treatmentsincluding chemotherapy and radiation.
These treatments work by killing cancer cells directly, but in the process, they often damage or kill the healthy cells in the heart tissue, too. In children, whose cells are still dividing faster than they would be in adulthood, this damage can keep the heart from developing the way it should, and can ultimately cause long-term side effects.
Dr. Gregory Aune, a pediatric hematologist-oncologist at UT Health, was only 16 years old when he was diagnosed with Hodgkin lymphoma. Nearly two decades after receiving chemo and radiation for his childhood cancer, Dr. Aune underwent emergency open-heart surgery at 35 to replace his aortic valve and bypass three blocked coronary arteries.
The surgery saved Dr. Aune's life, but left him frustrated about therapies that could cure his pediatric patients, but hurt them in the long run. "I thought, 'we need to find a better way to do this,'" Dr. Aune shared in a blog post. Since then, he has devoted his career to researching ways to protect children's hearts during and after cancer treatment.
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