Julia Janes was by all accounts a remarkable young woman.
She was an honors student, talented athlete and a college freshman of the year. She had a smile that could light up a room, was hopelessly optimistic and bubbled with an energy that people couldn’t help but gravitate toward.
Julia was also a cancer survivor and — in a tragic twist that some people might think reinforces the belief that life just isn’t fair — ultimately a cancer statistic. Julia died Nov. 14, 2013. She was only 20 years old.
In the relatively short time she lived, Julia made an impression on countless people, including teachers, fellow students, doctors, nurses and the cancer-stricken children she spent time with and to whom she read stories, even as she was in the midst of her own battle against the disease.
While Julia may no longer be here in person, her spirit lives on with those who knew and loved her, and in the organization founded in her honor.
Julia’s Legacy of Hope, which raises money that goes toward pediatric cancer research and services that help bring comfort and hope to children undergoing cancer treatment, held its fourth annual winter fundraiser Friday, Jan. 13, at Centennial Lanes in Tinley Park.
That Saturday evening, more than 200 people attended the event held by an organization that has raised roughly $100,000 since its founding in January 2014.
Julia was a talented soccer player. In 2009, Julia, then a sophomore at Oak Forest High School, was chosen to join the varsity squad during the playoffs.
However, she had developed a persistent limp despite not having been injured. An examination determined the limp was caused by a Coke can-sized tumor on Julia’s left tibia. She was diagnosed with Ewing’s sarcoma, a soft tissue and bone cancer that typically affects teens.
Julia immediately began aggressive treatments that wiped her out physically.
Her brother, Mike, four years her senior, after working and attending college classes, pick her up from the hospital and upon arriving at the family’s home would carry his sister up to her bedroom, explained her father, Jeff.
Nine-and-a-half months later — after chemotherapy, surgery and more chemotherapy — Julia was cured.
During her fight against cancer, she maintained her status as an honor roll student and became a member of the National Honor Society. In 2011, she graduated from Oak Forest.
She attended Bradley University, where she earned the title of Freshman Student of the Year and founded the first collegiate chapter in the nation of CureSearch, an international organization of doctors working to find a cure for pediatric cancers.
While home on winter break during her sophomore year at Bradley, Julia informed her parents that recently performed blood work “didn’t look so good,” recalled Jeff. Her parents didn’t suspect anything was terribly wrong, but they accompanied Julia to the hospital to speak with her doctor.
“We were confident everything was fine,” said Jeff, a teacher at Andrew High School. “She didn’t tell us that over the past month she would bruise [easily] all over.”
The news was devastating. After all she had endured during her first bout with cancer, Julia had been stricken again — this time with acute myeloid leukemia.
The disease had actually been caused by the chemotherapy drugs used to cure Julia of Ewing’s sarcoma.
The carcinogenic effects of the chemo treatments employed to cure Julia’s cancer are well-known in the medical community, and youths who overcome one form of cancer frequently develop secondary cancers.
“The chemotherapies they give the kids are not dosed very well,” Jeff said. “They’re adult chemotherapies.”
And so began Julia’s second battle, one she would ultimately lose but which would be the inspiration for the formation of the organization that bears her name.
Julia, already with a plan for how she would emotionally cope with undergoing treatment, found 66 quotes — humorous, positive, uplifting — printed them and made them into a collage on a poster board.
“And she made us carry it with us every time she went for a treatment,” said her mother, Leslie. “She would write one or two on a sticky note and focus on those for the day, and that was what she would say to herself to stay positive because it was just hell to go through what she went through.
“Those became very important to all of us, so we wanted to do something with those positive quotes.”
While hospitalized, Julia would hug her pillow, inhale “hope” and exhale “strength,” Leslie explained.
This gave Leslie the idea to have the quotes printed on pillows, which were later sold at fundraisers and distributed as part of “hope totes” to children undergoing cancer treatments at five hospitals in the Chicago area.
The “hope and strength” pillows are adorned with phrases such as: “It always seems impossible until it is done,” “Worrying will not change the outcome,” and — a superimposed over an image of actor Ryan Gosling — “Hey girl, I love it when you wear your yoga pants all day.”
The pillows — 300 of which the Janes currently have in their basement — are stuffed with the help of Julia’s Legacy of Hope Junior Board, composed of Andrew High School students. The youths also assist the organization’s services and fundraising efforts, but Leslie sees them as even more than that.
“We explain to the kids, ‘You’re the future; you’re going to be the doctors and the nurses, the scientists who are going to find the cure,” she said.
The funds raised by Julia’s Legacy go primarily toward research into pediatric cancers and secondary pediatric cancers, which are the least funded of all cancers when it comes to finding a cure, according to the Janes.
Jeff emphasized he empathizes with anyone who is suffering from cancer or has a loved one who is battling the disease, but is disheartened the cancers that afflict the people with their whole lives ahead of them are the least researched.
Finding treatments to replace the ones that can cause secondary cancers, and treatments to cure those secondary cancers, is imperative, Leslie added.
“Because who knows if they’re going to get cancer again or if they’re going to make it through, so this is where we need our money to go,” she said. “In the back of their head they’re wondering, ‘Is it going to come back? What will my life be like?’ It’s a terrible thing.
“This is what we promised Julia, what we would do until the day we die. Julia was speaking, but she’s not here anymore. So, we have to speak for her.”