“I Miss the Gone of You”: The Kristen Ann Carr Story

In 1990, Kristen Ann Carr, a 19-year-old honors journalism student at New York University,  received the shocking news that she had a form of soft-tissue sarcoma called retroperitoneal liposarcoma. A rare cancer of connective tissues, liposarcoma accounts for approximately 16 percent of all soft-tissue sarcomas. It can occur in almost any part of the body, but more than half of cases involve the thigh, and up to a third involve the abdominal cavity, which is where Kristen’s was found.

MSK Surgeon Murray Brennan
Dr. Murray Brennan

The diagnosis was devastating, but Kristen and her family were blessed to find Memorial Sloan Kettering and the world’s foremost sarcoma expert, surgeon Murray Brennan, then Chair of MSK’s Department of Surgery. “The story really starts with Kristen loving Dr. Brennan and him loving her back,” says her father, Dave Marsh.

But while Dr. Brennan believed he could help extend Kristen’s life — and through several surgeries, he did — he simultaneously had to acknowledge that her future was uncertain: At the time, sarcomas did not respond well to the available treatments and little research progress had been made. Kristen’s answer: “What do you need?” Dr. Brennan replied that, for a start, he needed more surgeons. Kristen went into action.

Working alternately from her hospital bed at MSK and, when she was able, from her off-campus apartment near NYU — and assisted by her best friend, Ilyse Lesser, her fiancé, Michael Solomon, and her mother, Barbara — Kristen began pulling together a circle of friends and family to spur the process of raising funds.

A Death Seeds Progress and Training

Tragically, in 1993, Kristen died at age 21. “We were shattered, but our path could not have been clearer,” Mr. Marsh says. Kristen’s instructions were to continue the mission she had started. “We could never have imagined that what Kristen sparked would make us so many wonderful friends, bring us into contact with so many brilliant people, and give us the opportunity to make such a big difference.”

Several months after Kristen’s death, family friend Bruce Springsteen stepped up and offered to stage a benefit concert at Madison Square Garden. The landmark event was a sell-out, raising approximately $1.5 million for the newly formed the Kristen Ann Carr Fund (KACF).

In 1994, the first KACF surgical fellow completed a year of specialized training under the supervision of Dr. Brennan. Every year since then, a KACF surgical fellow has trained at MSK in sarcoma research and treatment techniques. The result has been a large and diverse new generation of sarcoma experts who now form a network of expertise in locations across the United States and in eastern Canada. The fellowship is funded in perpetuity.

Also in 1994, Ms. Lesser and Mr. Solomon, along with other friends, formed a committee to host the KACF’s first annual benefit party, which later came to be known as “A Night to Remember.” Over the years, the benefit has grown, and it’s now a premier New York City event with a dedicated and enthusiastic following.

Another Fellowship, a New Research Laboratory

Since its beginnings, the KACF has grown exponentially, supporting MSK’s training and research programs to the tune of more than $10 million.

In 2008, the KACF began funding another annual fellowship, this one to provide specialized training in sarcoma treatment to an MSK medical oncologist. Half of all sarcoma patients are either not eligible for surgery or require post-surgery oncology treatment. For these patients, expert medical oncology is a lifesaving necessity.  As with the KACF Surgical Fellowship, KACF medical oncology fellows bring what they learn at MSK to institutions across the nation and help train future generations of sarcoma medical oncology experts.

And, in another major step forward, in 2011 the Kristen Ann Carr Sarcoma Laboratory opened at MSK. With projects including basic research, clinical trials, and treatment evaluation, the KACF laboratory was the first comprehensive research center dedicated exclusively to advancing knowledge and treatments in sarcoma.

Today, Yet Another Center

Most recently, a new “virtual” sarcoma center at MSK funded by the KACF promotes basic, translational, and clinical discovery in all aspects of soft-tissue tumors; provides a continuum of care between pediatric and adult patients; and allows the opportunity to share scientific and clinical resources.      

The center will seek to define the causes of sarcoma formation and growth to identify new ways to treat it. It will also look to determine how tumors become resistant to treatment and to develop and test targeted therapies in clinical trials. Finally, it will offer psychosocial services such as counseling to help MSK’s sarcoma patients and their families cope with their disease.

 “When we came to [MSK Physician-in-Chief] José Baselga with the idea to fund a center focused on sarcoma, we knew we’d need a proposal and were prepared to write it ourselves,” says Mr. Marsh. Dr. Baselga’s response was, “No. Let me do that.” Within weeks, the Kristen Ann Carr Fund had its proposal. “Without Dr. Baselga’s commitment, this new center wouldn’t exist,” Mr. Marsh says.  

“We’ve also been privileged to work closely over many years with [surgical oncologist and Chief of the Gastric and Mixed Tumor Service] Samuel Singer, [Chief of the Sarcoma Medical Oncology Service] William Tap, and [pathologist and Director of Bone and Soft Tissue Pathology] Cristina Antonescu,” he continues, “and all of them are members of the new center.” The center’s efforts in pediatric sarcoma research and treatment are being led by medical oncologist and pediatric sarcoma expert Paul Meyers.

Santa Claus, Bicycles, and an Anniversary Letter

Because sarcoma affects a disproportionate number of children and teens, the KACF puts on MSK’s annual holiday party for pediatric outpatients — and Mr. Marsh plays Santa, a role he cherishes.

In addition, friends and supporters of the KACF now take part in Cycle for Survival, a series of indoor team cycling events in which 100 percent of the funds raised are directly allocated to rare cancer research at MSK. To date, Cycle for Survival has raised more than $100 million and has funded more than 100 clinical trials and research studies.

“While we’re responsible for making sure that the money we raise is spent wisely, money can never be, for a minute, the primary thing we’re about,” says Mr. Marsh. “We are most of all meant to remember that what we do is about the lives of individuals who are fighting one of the hardest, loneliest battles in the world. All human beings should have nobility, including those who are being dragged through the monster that is sarcoma. We do what we do for them.”

Every year on the anniversary of her death, Mr. Marsh writes Kristen a letter and shares the text on his blog. In 2011, he ended his letter this way: “You set a standard and, in dying, put us to the test. All of us fight every day to get to, to stay in — hell, sometimes to believe in — the very real spirit of life as you lived it. I thank you for setting the standard. And I do try…. But you know, it’s like that song Christine Ohlman wrote after her mate, [musician] Doc Cavaliere, died: ‘I’m out here in the big wide world / It’s a beautiful place sometimes / I keep my eye on the sparrow and my mind open wide / But I just can’t keep from crying / I miss the gone of you, the gone of you, the gone of you / Right now.’ And I always will. Love from your pop.”

Learn more and donate to the Kristen Ann Carr Fund.