"Sometimes when I consider the tremendous consequences from little things … a chance word … a tap on the shoulder or a wink of an eye, I am tempted to think there are no little things." — Emily Dickinson
Making sure hospital rooms have space to display flowers. That could be considered a little thing.
Making sure the person who talks to American Indians about cancer prevention knows some tribes believe they can lose part of their soul when a nurse draws blood. That might be considered a little thing.
A handshake or a hug from the founder of the Huntsman Cancer Institute, given to an older man about to lose his battle with a brain tumor. That may seem like a little thing.
But tucked against the foothills in the valley's northeast corner, the Huntsman Cancer Institute has spent the past 10 years building its reputation and infrastructure on attention to the little things — most notably meticulous consideration of patient comforts and painstaking scientific research designed to cure cancer.
"I couldn't be more pleased with the way it has grown," Jon M. Huntsman said last week. "The largest single component of all we do is the Huntsman Cancer Institute."
Huntsman companies have 15,500 employees around the world, but the 66-year-old industrialist has been wholly committed to research and treatment for cancer, the disease that will be diagnosed in more than 6,000 Utahns this year and will kill 2,600.
From the farthest reaches of an old manila envelope in his corporate office, Huntsman digs out some hand-scratched notes from a decade ago.
"We must unite our resources both financially and medically to find a cure for cancer," the notes read. "No greater plague festers in our world."
They are sentiments penned 10 years ago on the day Huntsman gave $10 million to help establish a world-class cancer research institute at the University of Utah. He called the gift a "down payment to the end objective of whipping this dreaded disease."
He has been on the other side of the curtain many times, several times as a patient at University Hospital, as a cancer patient undergoing chemotherapy and surgery for prostate cancer and, as recently as this fall, as a patient at the clinic he made possible for skin cancer.
He is one of the richest men in the world and has always been passionate about a cure for cancer.
"Together we're going to build one of the greatest medical centers … brick by brick, dollar by dollar," he told dignitaries, doctors and community leaders in 1994, at the 50th anniversary celebration of the U.'s first four-year medical school graduating class.
And he has. In fact, the billionaire industrialist has dedicated time, money and energy to the cancer cause since 1991, when then-55-year-old Huntsman first sent a memo to his staff at Huntsman Chemical Corp. saying he'd been diagnosed with prostate cancer but vowing: "We are going to beat this thing."
Since then he has committed $225 million of his own money to the effort. He has toured every major cancer center in the world, making plans for the hallmark HCI hospital that opens next spring. And he has bested a few naysayers.
"When we talked to people early on about it," he said, "I don't think they thought we could do it."
But he did. Huntsman, with his son, Jon Huntsman Jr., with first HCI director Dr. Ray White and then successor Dr. Stephen Prescott, HCI has grown to include 49 renowned physicians, two state-of-the-art buildings, and a portfolio of important medical and research advances.
"We've built a wonderful spirit of commitment among people here, which is good for us but also lets people pursue their own goals," Prescott said.
While the East and West Coasts of the United States are dotted with big cancer centers, HCI is the only center recognized by the National Cancer Institute in the Mountain West. And Prescott would hold HCI up against anyone. "We compete very well, and we will continue to do so."
HCI gets about 33 percent of its $46 million budget from private support — primarily the Huntsman Foundation. Another 45 percent is from federal grants and funding and 13 percent comes from the state of Utah. The remaining 9 percent comes from a variety of other sources. In addition, HCI has a clinical budget of about $20 million, mostly paid through doctor charges and insurance payments.
Some in the medical community criticize HCI for its 800-pound-gorilla approach to cancer research. Prescott is aware of these claims and has heard allegations that HCI tries to attract patients away from other facilities.
"It absolutely is not part of our strategy to take patients away from others," he said.
Patients do have the right to choose their own care, and many do get second opinions at HCI. But the institute is doing all it can to meet patient demands it has already.
"We could have used that hospital a year ago."
Dr. John Ward, director of HCI's patient care center, shows the quotation by Emily Dickinson any time he gives a medical presentation.
He sees 50 to 60 patients a week and believes there are no little things when it comes to research into cancer cures and care for patients who suffer from the devastating disease.
"We try to know more about patients than just their disease," said Ward, head of patient care for Huntsman Cancer Institute. "We hope to be their friends as well as their doctors."
This approach is working for Ward's patient Dianne Shaw, who is battling breast cancer that has moved into her lungs and chest wall.
When her breast cancer returned after an initial successful round of radiation treatments, Shaw was assigned an HCI social worker who has helped the Sandy woman negotiate the complex emotional and spiritual trials that come along with cancer.
"They really help to integrate the whole person, not just what's happening to you physically," said Shaw.
It is terrifying to have cancer, Shaw said. The American Cancer Society predicts 200 women will die of breast cancer in Utah this year. But it is critical to have a positive outlook and to evaluate honestly the difference between being "cured" and "living with cancer."
She urges women to face their fears and get mammograms, "and I really encourage the men who have wives, mothers and sisters to make sure they do."
As part of its focus on cancer prevention, HCI has a public research library and education center in the lobby of the HCI main building.
It conducts free skin cancer screenings for the public each spring. Even the hard-hatted crews with Layton Construction working on the new HCI hospital slathered on sunscreen recently as part of education about the sun-spawned form of cancer.
One of HCI's fastest growing areas is in community outreach and education. In 3 1/2 years, funding has grown from about $200,000 to $1 million a year.
This allows the institute to reach out to communities and populations for which cancer prevention information isn't accessible.
The institute has worked particularly hard to reach Native American populations, which get cancers at about the same rate as other populations but die more often because prevention, treatment and education are less accessible, said Randy Burt, director of HCI's prevention and outreach programs.
A doctor on the Wind River Reservation in Wyoming called Huntsman in 1997. He reported an inordinate amount of colon cancer in one family and asked for help.
This case, which ended up as a study of 55 members of one extended family, taught Burt much about the way bioethics must be balanced with modern medicine — and how Native Americans regard their bodies.
Native Americans view the person and the body as a whole, so drawing blood, for example, can be considered drawing away part of a person's soul. Addressing health concerns in this special population also means accepting that tribal doctors are part of healing. So are medicine men.
"Many Native Americans have health practices part of cultural practice but not accepted medical practices," said Burt. "Our job is to meld the two."
The institute hired Phyllis Pettit Nassi, who has Cherokee and Otoe blood and was reared on a Navajo reservation in northern Arizona. As manager of special populations for HCI, she has flown 150,000 miles this year from Arizona to Alaska, talking with tribes about colon, breast and prostate cancers and smoking, an addiction that attracts 100 percent of young people in some tribes by age 16.
She works closely with spiritual leaders and tribal elders and has gained their trust. "I grew up with Indian Health Services. I know the lingo," Nassi says. "I am a product of the reservation."
So when she goes out into the community, urging women to get mammograms and others to get screening and preventative care, she has credibility. Nearly a quarter of HCI's research money is dedicated to prevention and screening efforts, Prescott said.
Dozens of researchers and scientists at Huntsman Cancer Institute devote all their days trying to figure out why things like this happen. What makes a cancer cell start growing again? Why do genes mutate and cause cancer? What causes these mistakes, and can they be corrected or prevented?
Today, 119 clinical trials are going on with implications for 12 types of cancer. "Those people are the heroes," said Brad Cairns, a research scientist. "They almost all participate knowing the drug probably won't help them, but they are willing to do it to help the next person."
Stephen Garavatti is a 53-year-old Utah man who has been treated for more than four years for colon cancer that metastasized into his lungs. Two years ago, when his chemotherapy stopped helping, he entered a clinical trial.
In March 2000, he enrolled in a study at the institute where he kept taking medications he was already on, but doctors added an experimental medicine called C225.
That's how clinical trials usually work: They compare the results of the best existing treatment by itself with that treatment enhanced by whatever regimen or medication is being tested.
"I felt like I had no other options at the time," he said. "It was a breath of hope."
And this may be the most valuable gift HCI gives patients — hope and time.
Halloween, Thanksgiving and Christmas all came the same day this year in the Frewin family household.
On Tuesday, Linda Frewin's two grandchildren showed up at 4 p.m. to trick-or-treat. Later, everyone including Frewin, the grandchildren, her husband and their two grown sons sat down to Thanksgiving dinner. Christmas presents followed.
The time is now for Linda Frewin, 56.
Her relationship with cancer started in June 2001. She had a pain in her leg that wouldn't go away. Tests showed a golf ball-size tumor in her brain, grounded in the left frontal lobe but stretched out across the right.
After a biopsy, doctors at St. Mark's Hospital gave her 18 months to live, Frewin said, and referred her to Huntsman.
"My world was spinning around me," she said.
Dr. Deborah Blumenthal, a neuro-oncologist, took Frewin's case to HCI's "tumor board," where a team of experts evaluates treatments and possibilities for each patient with a cancerous tumor. Then Blumenthal made a call to Frewin. "I know a physician who might be able to buy you a little more time," she told Frewin.
And time is exactly what Frewin wanted.
Time to see a second red-haired grandbaby come into the world a year ago.
Time to see her 25-year-old son, Shawn, make his way to Iraq — where he spends every day guarding the Baghdad Airport with the Army Reserves and the Army Corps of Engineers — and make his way home again.
And time to have the three-way holiday celebration Tuesday.
Two young children and a mother with a terminal illness qualified Shawn for two weeks of military "R and R" at home in Utah. Every moment is precious, so his mom planned Tuesday's gangbuster for two reasons.
"Because he's home and won't be able to return until May of next year," she says. "And because I don't know what my future holds."
Frewin believes Huntsman doctors already extended her future once, when surgeon Randy Jensen cut her ear-to-ear July 13, 2001, and removed a tumor that had grown to the size of a lemon in a few weeks. But it was too dangerous to touch part of the growth lying across the part of her brain that governs motor skills and speech.
Chemotherapy afterward kept the cancer at bay for 20 months, but Frewin said something "seemed amiss" in April and she went back to doctors. The tumor had started growing again. Today, Frewin is back on chemotherapy.
"We're attempting to keep a grip on it," she said. "We're hoping to give me some time. They can't stop it, and they can't go get it."
E-MAIL: lucy@desnews.com