Remembering Frank O'Day

It is with a heavy heart that I write this note. Frank O'Day passed away this morning at the age of 29 after a valiant battle with cancer that endured one year and nine months. That time was marked by his incredible will not only to survive, but to flourish in the dreams he had for his future.

In the fall of 2006, without hesitation, Frank agreed to allow me to film him in his fight. There were highs and lows that unfolded through the lens of a camera, and in awe I watched as he met every disappointment with a smile and ironclad determination.

What was supposed to be a story for "Nightline" became a lesson in living. Those who were fortunate enough to have known Frank will never forget the spirit in which he lived. He faced his cancer with selfless humor every step of the way. I will spend the rest of my days being inspired by Frank O'Day.

I know how hard it must have been early this morning for his powerful will to let go his spirit, but with his devoted family at his side, he passed peacefully.

It is with tremendous gratitude to Frank and to his family that I write these inadequate words. Never can his bravery, courage and enthusiasm for life be reduced to words. He was the meaning of courage. His family is the meaning of courage. I am forever grateful to them for opening up their lives to me and to ABC News.

After all, the public got to share in this gift that they gave us, a small record of Frank's extraordinary character and essence. If we can all live the way he lived, we will all be better people.

In lieu of flowers please send donations to:

Dana Farber c/o Dr. David C. Fisher 44 Binney Street Boston MA 02115

Please make checks payable To: Dana Farber c/o Dr. David C. Fisher and For: Memory of Frank O'Day. Donations will go directly to Hodgkin's Disease Research

Here is the original story we wrote about O'Day and other young people suffering from Cancer in September 2007.



The Sandwich Generation: Cancer Diagnoses for Young Adults Overlooked

By ROXANNA SHERWOOD

Sept. 19, 2007 —

He has not expressed an ounce of self-pity or a hint of anger, though for Frank O'Day it is easy to be angry. He is 29 years old and he has cancer. But according to O'Day, when it comes to cancer, anger is just a wasted emotion.

O'Day has been battling stage four Hodgkin's lymphoma with optimism, humor and dignity. He fights the way anyone would want to fight after a doctor delivers such tragic news. And even at 29, O'Day knows that hope is his only weapon.

Click here to see some of Frank O'Day's, Dr. Karen Albritton's, and Dr. David Fisher's responses to your questions and comments.

Katherine Miller was also filled with hope when she was diagnosed with colorectal cancer at the age of 25, just as she was beginning medical school at Des Moines University.

She too believed in her ability to conquer the disease. Miller, however, did not win that fight. With barely a hint of illness before her diagnosis, six months later she died at the age of 26.

Her family's experience during those six months of supporting her in her fight against cancer is the motivation for this story.

Bleak Statistics Continue to Surprise Scientists

Disturbing statistics, originally gathered by Dr. W. Archie Bleyer at the University of Texas Medical Center, show that since 1975, cancer survival rates have not improved for the 15-40 age group.

"It's the No. 1 disease-related killer in young adults," said Karen Albritton, an oncologist at the Dana-Farber Institute. "More people die of accidents and trauma, but after that, in terms of disease, it's the No. 1 cause of death."

The staggering statistics shocked Albritton, who is trying to change this bleak picture.

She's behind Dana-Farber's newly created Adolescent & Young Adult Cancer program because she knows how important specialized, nuanced care is to these young people. She says, and as research suggests, it is a matter of survival.

Albritton believes that many issues lie at the heart of this mystery, including delayed diagnosis, misdiagnosis, lack of emotional and psychosocial support, insurance problems, minimal involvement in clinical trials and a lack of focused support.

Young Adults Ignoring the Symptoms

O'Day neglected to go to the doctor when the first symptoms began to emerge. He lived with symptoms like drenching night sweats, pain and vomiting before getting to a doctor.

"The young adult is very happy to put it off on something," said Albritton. "They don't want a terrible diagnosis either. It's not even crossing their mind. 'But Mom, don't you think it could be cancer?' No one's asking that."

Young adults can also be snagged by insurance problems. Studies show that most young adults are less likely to even have health insurance. And when the cancer is colorectal, as in the case of Miller, there can be other insurance-related complications.

"Insurance will often block you from being able to get a colonoscopy before age 30," said Irene Miller, Katherine Miller's mother.

Irene Miller says that young adults in this position, like her daughter, also feel misunderstood. Sitting in waiting rooms with people often more than 25 years older, they feel at odds with their environment — very lost, very sick and very unsupported.

She recalls the irony of her daughter's youthful beauty as she sat among doctors who were firing off medical terms and protocols at her.

"There was not an ability to recognize that she was 25 and her life was going to be cut off."

Shuffled Through Waiting Rooms

Young adults with cancer and their families complain that they are frequently shuffled through medical care that caters to children or older adults, leaving them caught somewhere in the middle.

Perhaps Miller summed it up best when, according to her mother, she said, "They don't ever put themselves into the shoes of the patients."

Albritton readily offers that a solution can begin with simply listening to young adults better and working harder to understand what they feel or need.

"Children have done incredibly well. We've had incredible survival improvements, mainly because of treatment advancement," said Albritton. "Older patients have also done extremely well for somewhat different reasons — mostly more prevention. Early detection, mammography, prostate screenings have made survival improvements. So if you just look at those two groups, you say, 'We're doing fine.' But suddenly we saw this chasm of no improvement from 15 to 40."

"This group is caught between that group of older and younger groups," said Irene Miller. "They're in no-man's land."

Adult Care Versus Pediatric Care

There have essentially been two models for treating cancer: the care given to kids and the care given to adults older than 40.

Albritton points to a study of young adults with leukemia who were being treated by one or the other set of protocols. The results were dramatically different.

In the study, patients 15 to 21 years old were treated according to the pediatric model to check their survival five years later.

"Sixty-eight percent were alive five years later. And if you took the same group of patients the same age range [who] got the adult treatment, how did they do? They were 38 percent survival. That group that walked in the adult door was dying needlessly."

Albritton quickly points out that does not mean all young adults with all forms of cancer should simply be treated under a pediatric model. But the study's results suggest research is needed to see what this age group needs, she said.

At Dana-Farber, O'Day has been treated under a model that is designed specifically for him. For example, he was told by his doctors that he should consider banking his sperm.

"Studies have shown that if you ask cancer patients afterwards, 'Were you advised to do this?' too many of them say no," said Albritton. "They didn't discuss it. The doctor didn't discuss it."

Accepting O'Day's Illness

There is also the issue of what role the parents play. O'Day's mother Carol and his four sisters and brother had a hard time accepting that their son and baby brother had cancer.

"We had him having everything from tuberculosis to Lyme disease to … you name it," said Carol O'Day, sitting at her son's bedside for one of his many biweekly chemo sessions last year. "We just couldn't accept the fact that it could be something worse than something minor."

"The Saturdays are usually pretty easy. Sundays I'm more grounded," O'Day said as he swallowed another handful of pills late last year.

O'Day has the routine down pat. "Nightline" began coverage of his journey in October 2006, about midway through his first course of chemotherapy.

"Definitely might have some work to be done," said O'Day reacting to the update, "but we have some great tools and we're at the right place to do it, so I don't think it will be bad."

His remarkable optimism, according to Albritton, plays an important role in the ability to beat cancer.

"You know, you don't sit at home and complain and cry about stuff," said O'Day. "You get up and get it done. My dad never, never allowed you to complain about stuff and mope around."

O'Day's Optimism and Motivation for Life

In some ways, O'Day is relieved his father is not here to learn of his cancer diagnosis — a diagnosis that came just days after his own death by prostate cancer.

O'Day's enthusiasm for life and his faith in living was also inspired by the accidental death of his brother, who was hit by a car as he was riding a bike at the age of 19. The loss was devastating. O'Day has rare insight into pain, and through his pain he's learned to appreciate life. He takes most things in stride — even cancer.

"They often do have optimism," said Albritton. "Some of it is defense mechanism. Some of them down at their toes don't believe. They're scared, down at their toes."

If O'Day is scared, he does not show it — he is determined to keep living his life while going through cancer treatment, even if it means going to his high school reunion a day after a chemo session.

One of his main sources of support is a former high school classmate Mike Anderson.

Anderson is now in remission from his own battle with stage four Hodgkin's lymphoma. He has been a friend, counselor and inspiration to O'Day.

"It was perfect to have somebody in my age group, somebody I grew up with," said O'Day.

"He just had treatment on Friday and he's at his high school reunion up till one o'clock in the morning and then he's up hanging out with us this morning," said Anderson. "That's a strong guy."

For more information on the conditions mentioned in this story, visit the following Web sites:

The Ulman Cancer Fund for Young Adults

The Dana-Farber Cancer Institute

LivesStrong: Lance Armstrong Foundation

Planet Cancer