Providing a lifeline to kidney cancer patients and their families
For patients diagnosed with kidney cancer, becoming acquainted with the Judy Nicholson Kidney Cancer Foundation can be like getting guidance from an angel.
Named for Judy Nicholson, a Watson Realty realtor who died of kidney cancer in October 2009, the foundation was started by Nicholson’s family and friends to provide a lifeline to patients, family members and caregivers dealing with the sudden onset of kidney cancer.
The foundation offers kidney cancer patients and their loved ones contact with a network of others suffering from the disease as well as education on medications and treatments, support groups, and information on clinical trials. It also hosts one-day, free symposiums where prominent oncologists, therapists, and other cancer professionals bring awareness to the community about kidney cancer research, treatments, and trends.
“Some people who come to the hospitals for treatment don’t have the foggiest idea of what’s going on, and we want to be a resource for them,” said Nick Nicholson, Judy Nicholson’s widower, noting the foundation is the only one of its kind in the United States.
“We use Judy’s name because I love her memory and will never stop loving her, but the foundation is more about helping people that suddenly contract this disease and are dealing with it, because it’s a terrible thing. Going through it is beyond words,” he said, noting he was married to the love of his life for 47 years. “My gratification is helping people deal with kidney cancer and offering them education and whatever support we can.”
Judy, an award-winning realtor with Watson Realty in Ponte Vedra Beach, had no notion she was seriously ill until she experienced a fainting spell in February 2008. The incident frightened her, causing her to head to the Mayo Clinic in Jacksonville, where a CAT scan detected a large tumor in her right kidney.
The tumor was promptly removed by surgery in March 2008. But afterwards she was diagnosed with renal cell carcinoma, which had metastasized to her lymph nodes, the aorta of her kidney, and to her lungs, said Nicholson. After undergoing chemotherapy, she was readmitted to the Mayo Clinic to remove another aggressive tumor, which had destroyed one of her spinal vertebrae. Although her vertebrae had been replaced with a prosthesis, she was paralyzed on the left side, said Nicholson, adding Judy died in hospice Oct. 11, 2009.
“Judy had no prior indication she had a problem. Before this happened she’d only been to the hospital twice in her life, and that was to have babies,” he said, noting her physical in December 2007 came up clear.
“We set up the foundation because through the process of dying and the heartache Judy went through, we realized we were exploring new ground,” Nicholson continued. “We didn’t know anyone who had kidney cancer. There was no one to talk to, no patient-centric network in Jacksonville. We talked to the doctors, but because of HIPAA regulations they couldn’t tell us much. It was so incredibly frustrating as we dealt with the events that happened so quickly and devastatingly,” he said, noting Mayo Clinic’s cancer support group seemed insufficient because it included patients with breast, uterine, prostate, and colon cancers, which have different symptoms, and use different drugs, and treatments.
“Some people who come to the hospitals for treatment don’t have the foggiest idea of what’s going on, and we want to be a resource for them.”
— Nick Nicholson
Early on, the foundation tried to raise money for early kidney cancer detection and research, but soon realized whatever funds it raised would only be a “drop in the bucket.” Now it focuses only on patient support, education, and bringing awareness to patients of clinical trials, Nicholson said.
In March 2018, the foundation held a free one-day symposium at the University of North Florida featuring kidney cancer experts from throughout the United States, including Dr. Winston Tan of the Mayo Clinic. Since then, the idea has caught on. The foundation held a similar symposium in Indianapolis in June 2018 and planned to hold others in Philadelphia and Miami later in the year.
“The doctors who were speakers (at UNF) were so impressed they said, ‘We want you to do one of these in our town,’” said Linda Ostoski, president of the foundation.
With help from the Shepherd Agency, a Southbank marketing firm, the foundation spread awareness about the disease as part of the International Kidney Cancer Coalition on World Kidney Cancer Day, June 21. “Our foundation is deeply involved in bringing awareness of kidney cancer to Jacksonville,” Ostoski said.
In the future, the foundation hopes to open chapters where it hosts symposiums, she said. The organization also uses social media, Facetime, and different technologies to reach beyond Jacksonville and expand its patient support network. “A lot of people are too ill to go to meetings, so we are testing different avenues,” Ostoski said.
The foundation is also in the primary stages of finding a means to help patients in need from outside Northeast Florida finance travel costs and hotel stays so they can attend clinical trials in Jacksonville, said Nicholson.
To help fund the symposiums, the foundation has applied for grants from major pharmaceutical companies and will hold a golf tournament during Kidney Cancer Month in March 2019 at the Atlantic Beach Country Club.