St. Jude helped Tori survive leukemia

Tori Hinton’s earliest childhood memories include busy days with family and sports in a small Louisiana town. With an older brother and a dad as a coach, Tori’s free time was athletic: Softball, basketball, soccer — you name it, she played it. 

 But that all changed the year she turned 11.  

 During softball season, she felt a profound weakness that just wouldn’t lift.  

 Her pediatrician treated her for a sinus infection, then strep throat, but the fatigue lingered.  

 “I was out of school for about a month … and I still wasn't getting better,” Tori said. “My mom just had an intuition that something was really wrong with me.” 

 More blood tests revealed what her mother had feared. Tori did have something more serious. It was cancer. Hometown doctors referred the family to St. Jude Children’s Research Hospital.   

 Tori’s parents called their older son home from college and gathered the siblings in their bedroom to tell them of a word Tori had never heard: leukemia. A type of cancer in the blood and bone marrow, her parents said.  

 Cancer was a word she did know, and what she knew frightened her. Her 11-year-old mind understood cancer simply as a disease old people had, and they usually died from it. Processing her diagnosis with quick apprehension, she turned to her father and asked, “Am I going to die?’”  

 “My dad just told me, he didn't know,” Tori recalled. “But we were going to St. Jude and going to do everything we could not to let that happen.” 

 They didn’t have time to waste. Doctors at St. Jude were expecting her that day. Tori went to the softball field to say goodbye to her friends and then loaded into the car with her mother for the seven-hour drive to Memphis.  

 A persistent ache throbbed deep within Tori’s lower back, leg bones and joints, so they stopped several times along the way. Her mother climbed into the backseat to massage a pain she couldn’t reach, coaxed Tori into a restless slumber, then kept driving. They arrived on the St. Jude campus at 3 a.m.  

 “When we arrived, I remember walking through the front doors of what is now the patient care center, and I could see the sense of relief mostly on my mom's face,” Tori said. “I think she was just happy to be here, happy to know that somebody had finally figured out what was going on with me and that we were going to get right to work.” 

 And they did. Tori was taken up to the inpatient unit, where nurses started running tests immediately to confirm the diagnosis and doctors determined Tori’s treatment plan. By the morning, St. Jude had confirmed Tori had acute lymphoblastic leukemia (ALL), and she was placed on a protocol involving several rounds of chemotherapy lasting two-and-a-half years.  

 Tori remembers the fatigue and the pain in the early weeks of treatment being the worst, a time when massages, heating pads and pain medications did little to provide relief.  

 But she also began to feel the heaviness of the emotional toll this was taking. She missed her friends. She missed her active life. The change from being a child who was constantly playing sports to being in a bed, scanned and poked with needles, was difficult for her, Tori said. Some hometown friendships waned as she spent long stretches at St. Jude. The physical insecurity she felt when she began to lose her hair only worsened the social isolation she felt.  

 But she had family around her supporting her, encouraging her, Tori said. An aunt helped her use humor to get through hair loss. She made new friends at St. Jude, meeting up with other patients in common lobby spaces on inpatient floors to play card games and listen to music on a jukebox. And it was during this time, she also started thinking about how nice it would be to work in a place like St. Jude helping patients cope with treatment. 

 “It was not long into treatment that I was like, I'm going to work here one day,” Tori said. “I had no idea what I wanted to do. But I knew I was going to. I just always said that I'm going to go back to St. Jude to work.” 

 On her 14th birthday, she celebrated the end of her chemotherapy. 

 Tori finished high school and went on to college, with no evidence of cancer throughout that time. But St. Jude stayed with her, bringing Tori back to the Memphis campus every few years through St. Jude LIFE, a cohort study which helps researchers track and learn about the long-term health of childhood cancer survivors. Doctors who followed her through St. Jude LIFE have educated Tori on the possible side effects of her treatment 15 years ago — in her case, risk of heart disease and bone density concerns — and have told her how to monitor and manage those conditions. Information learned from St. Jude LIFE also helps St. Jude develop and refine treatments to reduce late effects, the treatment-related conditions that affect survivors.

 While Tori was in college, she began taking courses in psychology still considering possible jobs at St. Jude. When on campus for a St. Jude LIFE study visit, she met with a child life specialist and decided that would be her career. 

 St. Jude understands the importance of treating the whole child, not just the disease. The Department of Psychosocial Services includes teams of best-in-class specialists in a range of areas: social work, transition oncology, psychology, spiritual care, education, and child life. Nationally certified with backgrounds in human growth and development, education, psychology or counseling, child life specialists help children and teens cope with the challenges that come with being in the hospital and undergoing treatment.

As a childhood cancer survivor, Tori said she felt uniquely qualified to support patients who were facing a life-threatening disease, as she once had, and guiding them through the various aspects of treatments. Tori began working at St. Jude as a child life specialist in 2019. 

 In her work, Tori uses developmentally appropriate interventions to explain cancer, procedures and treatment to kids. These interventions include using teaching dolls with ports so patients can get comfortable with treatments, reading individualized books for patients about their specific diagnosis or surgeries and bringing medical equipment into play to get patients comfortable with hospital supplies they will experience often. Child life specialists also lead support groups for patients. Through these various sorts of interventions, Tori said she tries to help kids understand what treatment entails and how to cope with difficult things like needles and scans. 

 “I appreciated when people were honest with me and let me be a part of my care and didn't hide things from me,” Tori said. 

 “You might think, ‘Oh telling (kids) about cancer may be really scary or maybe we shouldn't,’” she said. “But it's really important that we're just honest with them, because when we're honest with them, we can really help them cope (and) set them up for success.” 

 Tori said she also helps ensure kids in treatment meet developmental milestones and engage in the activities they enjoy despite the weakness and limitations that come with being in treatment.

 When she first meets families, they’re honest and vulnerable with her, she said. They tell her they wished they hadn’t needed to come to St. Jude.  

 “I always say to them, I am really sorry that you have to be here… but if you're going to go through something like this in life, this is the place to be,” Tori said. 

 She tells them this because every day that she is cancer free and gets to work at her “dream job,” she is living proof of how St. Jude helps so many children not only survive their cancer but thrive afterward. 

 “I was so appreciative of the care and the treatment that I got here,” Tori said. “I knew that I wanted to give that to other people in life, and to make an impact on other people's lives in the future.”