Editor’s note: This story is part of a series examining top causes of death in Central Illinois. Future reporting will explore issues related to stroke and COVID-19.
Whyatt Yarnell was alive for 2,779 days. He spent 1,067 of them fighting for his life.
His grandmother, Lee Ann Dial, was in combat alongside him.
“You can’t go through what I went through with him and not develop a bond, an unbreakable bond,” said Dial, of Charleston. “We went to war together, and that’s what it was. It was a war against cancer.”
As his caregiver, Dial spent those 1,067 days with her grandson as he battled against cancer and the treatments that made him weak. Whyatt’s treatments also left him with damaged hearing, damaged eyesight and fragile bones.
In May, at 7 years old, Whyatt died with his family by his side.
“My other grandkids are going to grow up and they’re going to have lives,” Dial said. “They’re going to get driver’s licenses, they’re going to go to prom. They’re going to have all the school experiences that one expects you to have. They’re going to go to college or maybe they’ll go to trade school. They’ll have loves and they’ll have heartbreaks and they’ll have life. They’ll go on to have their own children. Whyatt will never have that opportunity.”
Since the Charleston boy’s death, Dial has turned her energy to making a difference.
“I’m so proud to be able to stand up and tell Whyatt’s story and carry on his legacy,” she said. “I don’t want anything from anybody, except for them to take his story and learn from it so that other children down the road don’t have to go through what he went through, so that other families don’t have to go through what we’ve gone through.”
Cancer is the second leading cause of death for Central Illinois, with heart disease ranking No. 1 and cerebrovascular disease or stroke at No. 3, according to a review of data from the Centers for Disease Control and Prevention.
The same three causes also rank at the top for the state and nation when looking at the period from 1999 to 2020. However, Central Illinois has a higher occurrence of deaths related to cancer than both the national and state averages.
Lee Enterprises Central Illinois reporters analyzed data for 16 counties across the region, including Coles, Cumberland, DeWitt, Douglas, Ford, LaSalle, Livingston, Logan, Macon, McLean, Moultrie, Piatt, Sangamon, Shelby, Tazewell and Woodford.
The data shows that 536,276 Illinoisans died from cancer over the analysis period. In the most recent year available, 2020, there were over 23,000 deaths due to cancer.
To put that in perspective, 192 out of every 100,000 people in Illinois died from cancer over the period. This is called the “crude rate,” or number of deaths per 100,000. Nationally, the crude rate for cancer in 187 for every 100,000 people.
The Central Illinois rate is higher than both averages, with 225 people dying of cancer out of every 100,000.
The data is imperfect. Cause of death is identified by doctors on a section of a person’s death certificate, according to the CDC. In many cases, especially with the elderly population and patients with multiple, chronic conditions, multiple factors lead to a person’s death.
Additionally, the CDC data does not account for the deaths of undocumented residents.
Still, physicians and medical experts who spoke to Lee Enterprises confirmed cancer remains a leading cause of death in the region.
What is cancer?
Estella Gaston was diagnosed with brain cancer in 1993 when she was 45 years old.
Her daughter, Sandra Dickerson, now keeps two photos of her mother. In one, Gaston is wearing jewelry and elaborately rimmed glasses, smiling for the camera. That picture was taken within the 20 years after her successful surgery that led to remission.
That was before her brain cancer returned.
“That distorted her,” said Dickerson, 55, of Bloomington. “The tumor began to spread laterally. She was going blind in one of her eyes and she began to lose her hair.”
In the second photo kept on Dickerson’s phone, the right side of Gaston’s face is swollen and puffy. She died in 2017 at age 69.
“It was hard for my kids,” Dickerson said through tears. “Just to see how cancer just beats you up … and (her) not being the same person that you grew up with, that your kids grew up with.”
While it can develop in various parts of the body, cancer at its most basic is a cellular error.
The most common way cancer develops is when “there’s an error in the actual machinery of the cell itself, where it starts dividing and it can’t turn off,” said Dr. Kyle Stang, a radiation oncologist at the OSF Cancer Center in Bloomington.
That uncontrolled division of cells can become a growth known as a tumor, he said.
Research shows several factors can affect a patient’s risk of cancer, including genetics and lifestyle choices.
“But the vast majority of cancers are these random errors that happen in a cell that it just begins to divide and it doesn’t stop,” Stang said.
However, Dr. Patrick Fernandes, a radiation oncologist at Carle BroMenn Medical Center in Normal, said it is possible to reduce the number of cancer-related deaths by reducing or eliminating exposure to “cancer-causing factors.”
The No. 1 factor is lifestyle, he said, suggesting a “simple adjustment in nutrition: eating well, eating healthy, eating lots of vegetables and fruits, decreasing red meat, fatty foods, exercise more.”
Fernandes said smoking, which can lead to various cancers, and exposure to sunlight are among the other controllable cancer-causing factors.
The OSF Cancer Center offers genetic counseling services for families with a history of cancer, Stang said, noting the role of genetics in cancer.
“That can be a lower proportion of the population that that affects, but it can be pretty meaningful,” he said. “If someone has a family history, and they get some genetic testing that tells us that they have a higher risk of a certain type of cancer, then they probably need additional testing to screen more effectively for that.”
During treatment, cancer patients often see three types of doctors: medical oncologists who use chemotherapy and other therapy treatments, surgeons who work to remove tumors, and radiation oncologists who use radiation therapy.
In the last two decades, cancer treatments have become faster, more targeted and more effective, said Valerie Jordan, director of oncology at Hospital Sisters Health System St. Mary’s Hospital in Decatur.
“There might be three people in the room that each have lung cancer or breast cancer, but all three of those have a different kind, and their treatment plans will be different,” she said. “So (it’s) more individualized.”
Some treatment plans are also less intensive than they used to be, Jordan added. Radiation therapy has developed to target tissue nearly exactly where a specific tumor is or was, meaning less normal tissue is affected by the radiation treatment field. Thus, side effects significantly decrease.
Stang, a radiation oncologist, said research shows 50-67% of cancer patients receive radiation therapy during their treatment regardless of cancer type.
“Cancer care nowadays is pretty complex because we know much more now than we used to,” Stang said. “We know that the best cancer care is really delivered with a multidisciplinary approach.”
Physicians and medical professionals agree that regular cancer screenings are key to early detection and better outcomes.
“There’s something called an annual physical exam, which everybody should do, because that is an exam where the physician gets a chance to examine the person thoroughly from head to foot,” Fernandes said.
Medical professionals from both St. Mary’s and Decatur Memorial Hospital said preventative measures have improved significantly in recent years.
Calvin Robinson, executive director of oncology services at DMH, said in the last five years, Central Illinois’ rate of cancer deaths has begun to align more closely with the nationwide average.
Jordan, the St. Mary’s oncology director, has worked in radiation therapy and oncology for 28 years and said patients are getting diagnosed early now more than ever before in her career.
However, Stang said data has shown that during the last two years of the pandemic, patients sought fewer screenings and thus presented with more advanced cancers at a higher rate.
Because of the variety of cancers, physicians recommend people undergo multiple screenings, including mammograms, colonoscopies and chest scans.
“We try to encourage people to get screening tests, like the ones we mentioned, because we just do a much better job of curing cancer or we’re more successful treating it when it’s an earlier stage,” Stang said. “For example, if someone comes in with a very big tumor that potentially could have been caught on a mammogram or something a couple of years ago, then we’re just less successful in treating it. And that makes sense because the cancer has just had more time to grow.”
Jordan said the biggest difference in the advancement of cancer care is that a cancer diagnosis is no longer seen as a “death sentence.”
“Because of early diagnosis, people are living much, much longer with cancer,” she said.
Lara Grobosky, team captain and event chair of the Macon County Relay For Life, agreed.
“Early diagnosis, when it comes to screenings, that’s going to lead to a good prognosis,” said Grobosky of Decatur.
The oncologists noted the best way to stay up to date with cancer screenings and assure early detection is to have a dependable primary care physician, and see them regularly.
Robinson noted Central Illinois’ higher cancer death rate could be because the region has lower rates of early detection.
“Our screening rates are lower,” he said. “We don’t see a lot of people. We don’t do a great job in Central Illinois of screening and prevention.”
Other social determinants of health also likely contribute to the region’s cancer death rate, Robinson said. Those determinants include higher rates of poverty and smoking, proximity to grocery stores and pharmacies, education, access to transportation, and environmental or industrial pollutants.
Like heart disease, covered last week in this series, one of the many factors that keeps patients from seeking help is access to care.
“This is the main thing,” Fernandes said. “Especially people in rural areas who don’t have sufficient medical providers, they have to drive long hours. That is a challenge.”
Besides location, Fernandes said some populations have not been educated about early detection. For some, “going to the doctor means ‘only when I’m sick,’” which compounds if people have had a negative experience with health care in the past, he said.
Eliminating social barriers to healthy living can help increase early cancer detection, Robinson said.
“We know that 70% of what impacts our health doesn’t happen in the hospital; it happens out in the community,” Robinson said. “All these things impact our health way more than what we do here at the hospital.”
To continue improving early detection rates, Robinson said health care providers must “get out into the communities” to reach underserved populations.
This is something that Fernandes has worked on in the past. Before coming to Bloomington-Normal, he worked in Freeport, where he helped to arrange community gatherings in churches and community centers to educate patients.
He said doctors, nurses and researchers distributed literature at those gatherings, trying to educate the community about early detection and prevention.
“The focus is mainly on the socially, economically disadvantaged people, because we know that’s where we need to focus more, because you see more cancer deaths in that population,” Fernandes said.
Stang agreed a “huge challenge” for the health care industry is getting services like cancer screenings to people who are uninsured or are otherwise outside the health care system.
“We’re pretty passionate about doing outreach for screening services for people who are already established in the OSF HealthCare system, but I think down the line a goal is to try to do some outreach for people who aren’t in our system or are uninsured and things like that,” he said.
He noted some regions have health care systems that send out mobile clinics, sometimes parking in underserved and low-income areas or attending community events and offering screening services.
“That’s a challenge that every health care system is dealing with, but it’s something that we’re trying to work on as well, because, you know, we don’t want those people to be forgotten. They deserve that service, too,” Stang said.
Funding & advocacy
Funding cancer research is a primary focus for volunteers with the American Cancer Society’s Relay for Life, Grobosky said.
Macon County Relay for Life has raised over $2 million since it first started in 1995.
Grobosky has been involved with Relay for Life for more than 20 years. She was initially moved to get involved after her father died of melanoma. At that point, she said, she had already lost her grandfather to pancreatic cancer and had seen several other loved ones diagnosed with cancer.
“I looked at it like, I have to make a difference no matter who I’m making that difference for,” Grobosky said. “I’m doing it for the person who hopefully won’t ever hear those words, ‘You have cancer.’”
This year the Illinois Department of Public Health released the 2022-27 Illinois Comprehensive Cancer Control Plan, developed by the Illinois Cancer Partnership — a coalition of partners including the American Cancer Society, the University of Illinois and the Southern Illinois University School of Medicine.
The plan outlines five priority goals for lowering cancer rates across the state:
- increase healthy living habits among youth and adults;
- reduce exposure to environmental carcinogens;
- prevent tobacco-related lung cancers among youth and adults;
- prevent HPV-related cancers;
- promote awareness of hereditary cancers and the use of genetic counseling.
Among other actions, partners should “advocate for continued state funding for tobacco control programs” and “work with state and national partners to support funding for pediatric cancer research,” the plan advises.
The state currently allocates millions of dollars in funding to various cancer research, screenings and grant programs. Illinois’ fiscal year 2023 budget includes funds dedicated to childhood cancer, breast and cervical cancer and prostate cancer, among other types. Those include some of the most common and fatal types of cancer that have been identified as priorities for the state.
Still, some think current government funding isn’t sufficient.
The 2023 Illinois state budget allocated just $75,000 to the IDPH Childhood Cancer Research Fund.
According to the American Cancer Society, an estimated 10,470 children younger than 15 in the United States will be diagnosed with cancer by the end of 2022. Around 1,050 will die.
Dial said she believes the best way to reduce those numbers is to increase the federal cancer research funding focused on all pediatric cancers from 4% to 8%. She will join dozens of family members affected by cancer on Sept. 17 in Washington, D.C., to deliver petitions demanding more funding.
Dial will deliver her petition to U.S. Rep. Mary Miller of Oakland.
“The only way it’ll change is to get the attention of representatives like Mary Miller,” Dial said.
In a statement to Lee Enterprises, Miller’s spokesperson said, “As a mother of seven and grandmother of 19, Congresswoman Miller supports any effort to research causes of childhood diseases and treatments for them, and she will look into this specific request.”
Dial is also organizing the second annual Whyatt’s Warriors Softball Tournament set for Sept. 10.
Funds raised from the tournament will be split between the St. Louis Children’s Hospital, Leaps of Love and a 13-year-old child in Decatur who is currently battling cancer.
“Without (Whyatt), I’m trying to find purpose in my life, which is why I’m so passionate about this and why I’m doing what I’m doing, because he was my everything,” Dial said.
Remission & caretaking
After nearly 46 years of marriage, Beth Harding said life without her husband, Dave, just isn’t as much fun.
“We just had such a great life together and we have a lot of fun together and he was, you just kind of had to know Dave. He was one of the kindest,” she said through tears, just three months after his death in May. “… It’s just, life is very different, not much fun.”
After his diagnosis in the fall of 2018, a combination of surgery and chemotherapy couldn’t stave off Dave Harding’s pancreatic cancer.
“He was not a smoker, not a drinker, you know, led a pretty clean life,” said Beth Harding, of Bloomington-Normal. “I think it just happens to some people, unfortunately. It’s not a good (type of cancer) to get, that’s for sure. And I know there’s no cancer that’s good. But pancreatic is just one that is pretty ruthless.”
According to Johns Hopkins Medicine, the combined five-year survival rate for pancreatic cancer is 5-10%, lower compared to other cancers because “far more people are diagnosed as stage IV when the disease has metastasized.”
Stage IV pancreatic cancer has a five-year survival rate of 1%. Beth Harding said she believes her husband’s cancer was at an early stage when he was diagnosed.
Despite his prognosis, Dave Harding remained positive, through chemotherapy, surgery and into remission about a year after his diagnosis.
“We felt like that was maybe the best news; that was very positive, and we were excited that maybe it was taken care of,” Beth Harding said. “Unfortunately, it was not.”
Dave Harding died May 19 at age 67.
“We were living life and enjoying life. It was the next August that he had a CT scan, and it had come back.”
While he was sick, Dave took up writing.
“Dave had a very weird sense of humor. So you have to understand that, and he was quite a fan of ‘The Wizard of Oz,’” his wife said.
His self-published book is called “Chemo & IVs & Shots Oh My…: My Paths Through Pancreatic Cancer,” and the Hardings made it available on Amazon.
“He was weird. But I loved him,” Beth Harding said of her husband, smiling. “He didn’t leave much out of it. He was very forthright. …It’s not for everybody probably, but his thinking was if he could help somebody else going through the process.”
As a caretaker, she said she transitioned her priorities quickly after his diagnosis.
“I think caregivers go so quickly, from a normal life to everything is geared to getting him better, making them feel better,” she said. “I kept a notebook, and every time we went to the cancer center, I kept track of his vitals as they did that.”
“You just kind of fall into that caregiver role, and that was OK. That was what I did,” Beth continued, noting Dave’s diagnosis caused them to miss holidays and family events as his health fluctuated. “It just affects every aspect of your life.”
Even though there have been advancements in care for cancer patients and support groups for cancer survivors and families, caregivers can be overlooked.
“Somebody needs to advocate for them,” said Dickerson, who was her mother’s primary caregiver. “Somebody needs to be there and say, ‘OK, well, we have this. We’re going to have family night.’”
Dickerson’s children were small when her mother was dying, and she had just started a new job at Sheridan Elementary School in Bloomington. She said family would come to see her mother, and they would ask about Gaston’s health.
But no one ever asked about Dickerson.
“I would just sit in the car and I would just cry and cry, like, ‘God, I’m just tired,’” she said.
Dickerson said being her mother’s primary caregiver was like fighting an uphill battle. The spiritual and emotional weight started to take a toll.
“There were just times where I was just tired. And saying, ‘I need help. I need help.’ …Like, ‘I need help because I’m tired. I need to be restored’,” she said.
So Dickerson looked to her roots for inspiration.
She said her family came from the South, where her ancestors picked cotton.
“In that time, it was community. You help people. You help your neighbor,” she said.
Her mother carried that mindset and made an impact helping her neighbors.
Inspired by her mother’s influence, Dickerson started the Estella Gaston Foundation in her honor.
While the foundation’s main goal is focused on financial literacy, Dickerson said some foundation members are dealing with cancer in their families. Supporting these families, as well as facilitating community, is especially meaningful to her.
“That was the culture that I grew up in,” Dickerson said.
Dickerson said serving others helps keep her mother close and has helped her cope with her mother’s death.
“I can’t do all she did, but I can do my part,” she said.
Still, after five years, the pain is very near for her. After Dickerson sat down with Lee reporters, tears brimming, she said she had told herself beforehand, “I’m a big girl. I ain’t going to cry.”
“But I miss her so much.”
When Dial received the call that her grandson Whyatt’s cancer was back, she was devastated.
“To say that I lost it would be a gross understatement,” she said. “I’ve seen in movies where the women just scream and they collapse to the floor and I always thought, ‘Oh my God, that’s so overdramatic.’ No, it’s not. I’ve never experienced that level of devastation in my life as I did that day. I felt like everything had been for nothing, which is why I’m still fighting. I’m still fighting for him because it’s not for nothing. If his story can help anybody, then it’s not for nothing.”
Dial said children with cancer have incredible strength, but it comes with vulnerability.
“It is not warm and fuzzy. Yeah, there’s smiles and there’s strength and there’s tenacity and there’s strength in adversity and all of that in pediatric cancer, absolutely, but the reality of it is horrific,” she said. “The mental aspect of it, the physical aspect of just getting through these treatments — the strength that they show is just incredible, but what is left over is a fragility that is just incomparable to anything else.”
Now that his fight is over, Dial wants to ensure Whyatt is never forgotten.
“His strength, his humor, his kindness, his capacity for love, his heart: Those are the things I want people to know.”
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