Ellen Gregoire had just turned 5 when she received a diagnosis that would change her life – and affect her family for years to come.
“I turned five in April and I received the diagnosis in June,” the 17-year-old remembers.
Ellen, who has grown up on her family’s farm near Larimore, N.D., had been plagued with recurring colds and extreme fatigue, and several doctor visits did not yield an answer until Dr. Larry Halvorson, a family physician, conducted a blood test and then referred the family to a pediatrician, Dr. Eric Lunn, who confirmed the diagnosis: acute lymphoblastic leukemia.
“I have very specific, small memories of the time, but most of what I know, I will ask my parents about it,” she said.
“I think it might have been kind of a blessing, although it’s kind of odd to say, that I was so young,” she said, “because I don’t remember a lot of it and a lot of the scary things that I went through.”
As a 5-year-old, she didn’t fully grasp the idea of having cancer. “It was more, I don’t feel right, I can’t go to school and be with my friends, and I can’t do things that I love to do around the farm.”
The gravity of her own mortality also eluded her – the possibility that her disease could be life-threatening “did not occur to me until a couple years down the line,” she said.
For her, “the hardest part was not being able to be a normal kid a lot of the time. When a normal kid has a fever, their parents will give them Tylenol. When I had a fever, I had to be rushed to the emergency room, no matter what time it was.”
She had to travel with her parents to Fargo for chemotherapy treatments and spinal tap procedures at the Roger Maris Cancer Center.
“When I was at home I had to take different oral chemo (therapy medications),” she said.
She was in remission about a month after starting cancer treatment, but she underwent treatment “to kill every (cancer) cell for two years,” she said. That the cancer may reemerge was an ever-present, if sometimes dormant, concern.
Ellen was a kindergartener at Larimore Elementary School when two specialists from MeritCare Children’s Hospital, now Sanford Health, in Fargo came to her classroom to explain Ellen’s illness and assure her classmates that cancer is not contagious, so they needn’t be fearful about being near her.
Wendy Iwerks, a child life specialist, still remembers the visit.
The goal was “to really clarify those misconceptions and fears kids have about someone in their school being diagnosed with cancer,” she said. “The kids asked some really good questions.”
This kind of communication is especially important “because when kids don’t know what’s going on, and they don’t get the correct information (presented) in a developmental way that they can understand, they fill in the blanks with their own information, and a lot of their own information is much worse and is very wrong.”
Some kids worry about cancer being contagious or “the child might think, ‘Did I do something to cause this?’ ” Iwerks said.
They often have incorrect information, “because they don’t have life experience and the developmental capability to process what’s happening in their family or what’s happened to themselves.”
Iwerks, whose background includes the study of psychology and human development, and her colleagues have incorporated this kind of support in health care delivery for children.
“At Sanford, we’re very supportive of child life,” she said. “We do things to help kids get through this (kind of health challenge). We explain things to kids. In the last 20 years, that’s really been the way it is here.”
Over the years, Iwerks has seen a change in the way families help their children with serious health diagnoses.
“For the most part, families are better than they were when I started, at sharing information with their kids,” she said. When she began her career, “families felt the need to protect children from information.”
But professionals have found that if they’re given age-appropriate information, “without too much overwhelming information, that kids do really well,” Iwerks said.
Ellen’s lifelong best friend, Riley Cronin, remembered that presentation and how it helped classmates grasp the facts about Ellen’s cancer diagnosis.
As a kindergartener, Riley knew a little bit about cancer, but “we definitely learned a lot more about what was making Ellen so sick,” she said.
“It was very hard at the beginning of the year,” Riley said. “My sister and I were really upset because Ellen was the only one we knew going into it and she was our best friend. It was very hard knowing she wouldn’t be in class with us, and we were just scared because she was so sick.”
First ‘distance learner’
As a kindergartener, Ellen had to be away from school for weeks at a time for cancer treatment and to avoid threats to her weakened immune system.
During her absences, she stayed connected to her kindergarten class via a system similar to Skype.
“I could see what was going on in my classroom,” she said. “I could stay in touch with my classmates.”
As she looks back on her use of technology that is much more common now, she said, “I was one of the front-runners in that.”
Stacie Pulford was Ellen’s kindergarten teacher at Larimore Elementary School that fall.
“Ellen was the first distance learner I ever had,” Pulford remembered. She still teaches kindergarten at the school.
And now Ellen is concluding her career at the Larimore school with distance learning in some classes.
“We used Skype back then,” Pulford said. “She’d Skype in at certain times. She’d live-stream into (the classroom).”
The technology allowed Ellen to connect with her class after she’d had chemotherapy treatment, and couldn’t attend in person. She was away from school for about one-third of her kindergarten year.
“It was (a way) to make her feel part of the classroom” and build relationships with other students, Pulford said. “That’s what I worried about most – that she’d feel disconnected.”
Skype was used “to protect her,” she said. “Now, (technology is used) to protect all of us.”
The visit by Iwerks and Marcia Substad, a MeritCare nurse, that fall was an important step to help Ellen transition back into the classroom, and to help her classmates understand her illness “in terms they could understand, and not scare them,” Pulford said.
An illness like cancer “is hard for 5- and 6-year-olds to really understand,” she said.
The health professionals’ explanations were helpful “so (Ellen) wouldn’t feel so awkward, especially with losing her hair” after cancer treatment, Pulford said.
“It began to feel normal for all of us,” she said. “We talked about it a lot that year. It became normal for them – they didn’t think any differently.”
The group discussion helped to prevent “teasing or just the questions kids ask without meaning to be hurtful – they’re just curious,” Pulford said.
Riley and Hailey Cronin, who will graduate with Ellen from Larimore High School this coming spring, have maintained a close friendship with her since they were toddlers.
Although as a kindergartener, she may not have grasped the gravity of the situation, Riley said watching her friend go through this health crisis may have played a part in her own decision to pursue a career in nursing.
“I’ve always just wanted to help people,” Riley said. “Because we were so close with her, we did get to see her more often than other classmates and got to spend time with her. (The desire) to help Ellen and wanting her to feel better, I think some of that (penchant for nursing) did grow from that experience.”
Lessons from cancer
When asked what cancer taught her about herself, Ellen said, “It taught me that I’m resilient and I can bounce back from anything.”
“It also taught me a lot about the goodness of people,” she said. “When I had cancer, we saw people really rally around our family, not just people in our town, but people everywhere.”
A family friend organized a 5K race the summer she was diagnosed and donated the proceeds to her family. Friends brought meals to the Gregoire home and welcomed her two brothers to stay overnight in their homes when her parents had to rush Ellen to the emergency room.
She was granted a Make-a-Wish trip to California, in December following her diagnosis, where a movie producer gave her one of the dogs featured in the “Santa Buddies” movie. Since then Rosebud has been a constant, very close companion to Ellen.
“I think cancer has shaped me because I probably have more compassion and empathy for people,” she said. Since receiving her diagnosis she has “wanted to do something in the medical field.”
Her high school years were marked by athletics success. Gregoire's six years of running cross country culminated with a fourth-place finish in the Class B East Region meet and an eighth-place finish, out of 208 competitors, at the state Class B girls meet earlier this fall. She was voted East Region Senior Athlete of the Year and State Girls Class B Outstanding Senior Athlete by the cross country coaches.
She’s considering a career in dietetics because, as a runner, she’s interested especially “in how different foods fuel your body,” she said.
Relying on faith
Ellen’s bout with cancer “made me realize how important my faith is and how important it is to lean on my family and friends – and that nothing is ever guaranteed,” she said.
Her family, parents Ann Bailey and Brian Gregoire and brothers Brendan and Thomas have always been “strong Catholics – we’ve gone to church every Sunday,” she said. “When I had cancer, it strengthened not only my faith, but everyone’s faith.”
Attending Mass regularly “was an important part of curing me. And now that’s kind of transferred into my life and I have a trust in God that, if He brought me through that, He’ll bring me through anything.”
Ellen believes in the power of prayer. She also harbors a deep trust in Dr. Nathan Kobrinsky, at Essentia Health in Fargo, who has been her pediatric oncologist for the past dozen years.
“The number one thing I appreciate about Dr. Kobrinsky is his honesty,” she said. “He’s a very kind man, but he never tries to sugarcoat things. Even though I was only 5, he sat down and talked to me and told me what was happening and what I was going to be going through….
“It’s really important, I think especially when dealing with kids, that the doctor talks to the child, not just their parents, because that really helped me to have a better understanding and feel like I could be heard.”
Such honesty instilled in Ellen a trust “that he was always going to tell me the truth,” she said. “He is amazing.”
At her 10th and final cancer check-up recently with Kobrinsky, he told Ellen and her parents that he is confident the leukemia is in her past forever.