At 21, fighting cancer a second time
Community has raised nearly $40K for Tess Michaelsen
NEWTOWN — At 5 years old, Tess Michaelsen beat leukemia.
As a college student, she worked at a camp for children with serious illnesses while she chased her dreams of becoming a child life specialist on an oncology wing.
But this summer, the 21-year-old Newtown woman was diagnosed again with cancer—this time the extremely rare exterior-axial chordoma, which started in her elbow and has spread to her lungs and lymph nodes.
“I’m angry to have cancer again,” said Michaelsen, an Immaculate High School graduate and senior at Xavier University in Ohio. “I said one time when I first got diagnosed like, ‘Man, why couldn’t God have given me an easy cancer.”
Her older cousin Maggie Moore called the second diagnosis “unthinkable.” But friends and family describe Michaelsen as resilient.
“She’s a really tough, really special person,” Moore said. “We’re just trying to get through this whole thing together. She’s going to get there.”
A GoFundMe page started by her friends has garnered nearly $40,000 for her medical bills.
She will undergo chemotherapy, radiation and numerous surgeries, the GoFundMe page states. She also takes medication and participates in a trial study.
“It’s so rare, they don’t have a cure or treatment plan because not a lot of people have had it,” Michaelsen said.
Her college friend Kayla O’Keefe, who helped start the GoFundMe, describes Michaelsen as someone who puts others first. Once, when Michaelsen’s grandmother was sick, she cheered up the friend group by suggesting a trip to the zoo.
“It didn’t matter that everyone was going through a hard time,” O’Keefe said. “She was able to change everyone’s thoughts just like that.”
At the beginning of the pandemic, Michaelsen was an essential worker, helping her parents and younger brother at the family’s Bartolo Restaurant in Ridgefield. She has since stopped working on her doctor’s orders.
Michaelsen, a psychology major and biology minor, is virtually taking classes from home.
“It is completely bad ass that Tess is still going through treatment and taking 18 credit hours on top of everything,” said Grace Rieger, her college friend who helped start the GoFundMe.
Long road to diagnosis
When Michaelsen started her freshman year, she noticed her left arm got stuck in a position “kind of like when you’re doing the chicken dance,” she said.
She did Cross Fit and played soccer in high school and was not in pain, so she chalked it up to a sports injury. She had no issues sophomore year.
But this February, her arm started to hurt. In Cincinnati, she was told she had tennis elbow, then golfer’s elbow.
“In my gut, I knew it was something different,” Michaelsen said. “It got to the point that I couldn’t move my arm at all.”
The pain became more extreme when she returned home in March due to the coronavirus pandemic. In April, her doctor told her it was a type of arthritis.
Then, an orthopedic surgeon diagnosed her with myoepithelial carcinoma, a rare cancerous tumor.
Even that wasn’t right.
In July, she was diagnosed with the similar exterior-axial chordoma.
After Michaelsen found out she had cancer, her friend Savannah Plaisted came over.
“I had barely been seeing her at that point,” said Plaisted, who graduated from Immaculate High School with her. “We sat in her garage with masks on, six feet apart.”
Michaelsen said it was hard to tell people about the diagnosis. Her high school classmates had known she had leukemia, but many in college did not.
“I didn’t want to be labeled as the cancer girl,” she said.
Living with the diagnosis
Michaelsen had to freeze her eggs in case she wants to have children in the future because the treatment could negatively affect the eggs or make her infertile.
“I didn’t think I would be doing that at 21 years old,” Michaelsen said.
The pandemic has made the experience more challenging because it extended wait times between her doctor’s appointments and her parents were not allowed to come with her, she said.
She said she is in physical pain every day, so she cannot forget that she has cancer.
“It’s all just really difficult because it plays a big mental role on me too because when it hurts, I know it’s there,” Michaelsen said.
Michaelsen had leukemia between ages 2 to 5, so she does not remember much.
“The stuff that I do (remember) is very vivid,” she said. “I remember my parents would call this medicine that I would take ‘magic milk.’”
Chemotherapy and bone marrow treatment made her cancerfree. At 6, she started going to Hole in the Wall Gang Camp in Ashford and served as a leader in training at 17 and 18. She worked as a counselor the summer before her junior year of college.
“I really like showing the kids the experience I had when I was a kid,” Michaelsen said. “It’s really cool to meet so many different kids and then make them feel the same way you did when you drove through those gates. It’s such a special place.”
Her goal is to do that again as a child life specialist for kids with cancer.
“That’s my whole life in one picture,” she said.