Battling a rare form of soft tissue sarcoma led one graduate student to study public health. Then COVID-19 came to the states, and her research morphed into how cancer patients faced the pandemic.
Aldara Henderson, of Tampa Bay, Florida, began her graduate education at SIUE after going into partial remission.
“About five years ago I went to the hospital with pain, and it turned out I had stage four cancer and they gave me four months to live,” Aldara said. “With what I experienced and the connections I’ve made with other cancer patients and with COVID-19 and everything going on, it is so important to reach out and help [cancer patients].”
Dr. Hauibo Xin, associate professor and chair of the Department of Applied Health, served as Aldara’s mentor and chair of her thesis committee. Xin said given the lack of guidelines for cancer patients during the pandemic, Aldara’s research was all the more valuable.
“[During COVID-19], I think she realized cancer patients may experience more challenges, but she also realized how resilient cancer patients could be,” Xin said. “She was very interested in knowing how they’re doing and what they’re doing during COVID-19 situations — there’s a significant lack of guidelines for cancer patients during public health emergencies.”
Aldara interviewed over 200 patients.
“I had an open question of ‘What have been challenges you have faced with cancer during COVID-19?’ and some of the stories people anonymously wrote were heartbreaking,” Aldara said. “We had people who had their scans delayed and delayed and delayed and by the time they were diagnosed [the cancer] had already metastasized.”
Aldara’s own journey battling soft tissue sarcoma was unique. According to Dr. Peter Anderson, professor and pediatric oncologist at the Cleveland Clinic, Aldara’s cancer was extremely rare — it involved her abdomen and a tumor with a rare fusion gene.
“She had one of the highest risk cancers imaginable. Most people with multiple metastases die — probably greater than 90 percent,” Anderson said. “She managed to stay on track and get all the therapy she could.”
Anderson said he thinks her treatment was full of doubts from her oncologist about whether her surgery could be done, but she made a request that inspired him to change his outlook on cancer treatment.
“Instead of asking for a cure, she said ‘I would like to become a statistical outlier,’” Anderson said. “I’ve actually used her saying in my practice many times since then — teaching patients and their caregivers and family how to interact with oncologists.”
David Henderson, Aldara’s husband, said the search for doctors was a difficult road.
“One doctor just told us, ‘I don’t even know what to do’ — the next one said, ‘I’m sorry, you’re going to die in four months’ and I went, ‘Whelp. You’re not the one either,’” David said. “We went through all of that and we finally came to a couple of doctors that said ‘Look, I can’t promise you anything, but we’ll try’ and that’s what we went with.”
Once Aldara reached partial remission, David encouraged her to go back to school.
“I actually said to her, ‘I want you to go back to college. I think now is a good time. You’ve been without cancer for a while now,’” David said. “The thing that went through my mind was she thought, ‘[Why] spend all that money and that time when I’m going to be dead in two years?’ and then I went ‘when you’re not [dead], you’re going to have a master’s degree. Do it now and if the cancer comes back, we’ll deal with it — we’ll figure it out.’”
David said he is very proud of what his wife has been able to accomplish after everything she’s been through.
“Having gone from what happened in February of 2016 to now has been an amazing turnaround, with every aspect of her life,” David said.
Aldara said she is excited to graduate, but she wishes she got to experience more in-person research projects like one she had in Uganda to research mosquitoes and malaria. The in-person research was canceled over the summer due to the pandemic.
“It’s great — it’s like I made it through. I live my life in increments between scans, and right now it’s every six months,” Aldara said. “It’s just going to be nice that before this next scan, I’ll have my graduation under my belt.”