Outreach: Cullather Center
A unique place in Virginia for those with brain tumors
By Joan Tupponce

Fifty-six-year-old Marie Smook worried about her future last December when she learned she had a benign brain tumor that required surgery.

“I was really nervous about it,” she recalls.

At work one day, one of Smook’s co-workers saw her on the verge of tears and called a friend, Dr. Sherry Fox, Ph.D., RN, CNRN, director of the Cullather Brain Tumor Quality of Life Center, to solicit her help.

“Dr. Fox called me immediately,” Smook says. “She told me she was there for me if I needed to talk with her. I went in that afternoon.”

The Cullather Brain Tumor Quality of Life Center is a nurse-run non-profit organization that provides educational resources and anticipatory guidance to patients and families with primary and metastatic brain tumors. Services are provided free to patients and their families. As part of its mission, Cullather also educates health-care professionals about the unique needs of patients with a brain tumor.

“We don’t focus on treatment,” Fox says. “We focus on quality of life. We help people live with the effects of the tumor and the effects of the treatment.”

Inside a treatment room at the Cullather Brain Tumor Quality of Life Center in Richmond, VA

Many of the patients who come to Cullather have a neurological problem in addition to brain cancer. “That combination makes them unique,” Fox says. “It’s difficult for them to find the right services. That’s where we come in. We help them find the services that will improve their quality of life.”

Smook remembers her first meeting with Fox and patient advocate Cathy Willis.

“They sat with me for an hour and explained the center,” she says. “They gave me books and brochures to read. They told me to call them if I needed anything. I walked out of there with the feeling that I had new family members. It was unbelievable how much support they gave me.”

Fox and Willis were available to Smook before and after her surgery in April.

“They knew I was getting second and third opinions, so they helped me with that prior to surgery,” she says. “They came to the hospital to see my family and made sure they were comfortable. They were there for them as well. The first week I was home they called my husband and sent emails to make sure we were okay and to tell us they were there if we needed them.”

The center opened in Sept. 2006 with the financial support of Richmonder Jack Cullather, who lost both his son and wife to brain tumors. Cullather saw firsthand how a brain tumor can tragically affect an entire family. Fox took care of Cullather’s son, Chris, when he was a patient at VCU Medical Center, where Fox worked at the time.

“Chris had a GBM, glioblastoma multiforme, the worst possible brain tumor,” she recalls. “I met the family when I took care of him.”

Several years after Chris’ death, Jack’s wife, Jean, discovered she also had a GBM tumor. The couple tried to find resources that would help them cope with their changing world. Patients who have a brain tumor suffer mental and financial disabilities — often they cannot work during treatment — as well as physical disabilities. They deal with a myriad of health-related problems that include seizures, loss of speech, paralysis and memory problems. They are not able to drive, which can cause them to feel isolated.

Sherry Fox, PhD, RN, CNRN Director of the Cullather Brain Tumor Quality of Life Center

“Patients have to learn to live a new normal because of the profound changes they go through,” Fox says. “The Cullathers couldn’t get the care and information that would help them live the new normal.”

It was at that moment that Cullather realized the need for a center that would help families deal with the physical and emotional issues related to brain tumors. When it came time to appoint the center’s director, Cullather turned to Fox, asking her to leave the academic world and run the organization.

“As soon as we opened I started seeing patients,” Fox says. “Since opening, we’ve served 70 patients and their families.”

Cullather and Fox chose to locate the center at Bon Secours St. Mary’s Hospital.

“We were compatible. Our mission and the mission of Bon Secours in terms of quality of life was a good match,” Fox says.

Fox believes the center’s patient load will continue to increase as more people are diagnosed with brain tumors — it is estimated that this year, approximately 40,000 Americans will be diagnosed with a primary brain tumor. Each year almost 100,000 Americans experience the symptoms of metastatic brain tumors.

“Patients come to us from all stages of diagnosis,” Fox says. “We work with them through the illness. We help them adapt and cope. We don’t want to take hope away from any patient. We help people hope for the best but plan for the worst.”

Fox and Willis often meet together with patients and their families.

“We get to know them,” Fox says. “Cathy talks about the disease from a personal standpoint — her husband died from metastatic lung cancer.”

The fact that the center is a nurse-run organization is important to Fox.

“We are providing services that physicians don’t have time to provide,” she explains. “They don’t always have the view of the patient that a nurse has. They are limited on time that they can spend with a patient. Nurses have unique skills that can help people anticipate the future and creative, innovative ways to meet their needs.”

Nursing is a critical part of health care, she adds. “I was frustrated about the lack of resources for these patients and the lack of time that clinics have to address these issues. Being able to create services I couldn’t find for them is the highlight of my career as a nurse. All of my work has come together to help me conceptualize and offer the services of this center.”

Smook is happy to have found the center. “I can’t imagine going through this without them,” she says.