Juliana Smith’s parents couldn’t believe it when their four-year-old showed signs of puberty and wore a size seven shoe as a kindergartener. The experts at Vanderbilt University Medical Center could not detect any abnormalities and diagnosed her with precocious puberty.
A couple of years went by, and Smith began experiencing severe headaches. She also had a virus nearly every other week – feeling like she was constantly sick. The pediatrician agreed to do a CAT scan even though he didn’t expect they would find anything. “The radiologist had tears going down her face when she was looking at the scan,” Smith remembers. “But she wasn’t allowed to tell us anything in person. We had to drive home and listen to a message on our answering machine saying that I had a huge mass behind my eyes and nose.”
It was January of 1998, and Smith was only seven years old. The Madisonville, Kentucky-based family made the two-hour drive to Vanderbilt the next week. Smith needed surgery to remove the cancerous tumor (Juvenile Pilocytic Astrocytoma), but the doctors first inserted a shunt to relieve the intense pressure that had built up over the years. The doctors believed the first grader had been born with the tumor and couldn’t believe she had made it this far. They removed 88 percent of the golf ball-sized mass – afraid to go any deeper – and prescribed 18 months of chemotherapy.
Fortunately, the chemo didn’t make her terribly sick, and Smith was able to attend school every day except Thursdays when she received her treatments. Unfortunately, the remaining tumor didn’t shrink, and when the chemo stopped, it began to grow again. Smith underwent her second brain surgery in 2000 when she was in fourth grade. The neurosurgeon hoped he had gotten it all and that there was only scar tissue left. A year of more difficult chemotherapy followed, including numerous platelet transfusions and large doses of Benadryl to allow her body to accept the treatments.
“I spent so much time in that infusion room, but I have good memories of the place,” Smith says. “My little brother was a toddler at the time, and I can still see my neuro-oncologist picking him up and carrying him around with his coat swinging. He grew up with a lot of acceptance – playing with kids who had lost their hair or had an eye swollen shut due to their cancer treatments.”
The mass (which turned out to not be scar tissue) stayed the same size for five years until it began growing again when Smith was 15. This time, her surgeon, who had moved to the Cleveland Clinic, thought he could get all of the tumor and was optimistic about a new type of radiation that was less likely to cause other types of cancer. The good news was that the surgery and radiation worked. The bad news is that the latter put Smith into early menopause before she could even drive.
It has been 25 years since her first diagnosis at age seven and nearly two decades since Smith was declared cancer-free. Her only long-term symptom is short-term memory loss. The biggest outcome of this experience is her positive attitude. “I might not be able to tell you what I ate for dinner last night, but I have an aptitude for math and an optimistic outlook,” the long-time tutor says.
Smith counts her blessings every day – starting with a trip of a lifetime (which she has since repeated twice) to Germany as a Make-A-Wish recipient in 1999. Her grandmother migrated from a Bavarian town to the United States, and the Smiths were thrilled to meet their extended family.
The experience has kept the immediate family close as well. Thirteen years ago, they moved to Indiana, where Smith used her associate degree as a chemistry and high school teaching assistant for more than a decade. After visiting her brother in South Carolina, they moved here two years ago to reunite the family once again.
Now a Chapin resident, Smith loves her job at Auten’s Loft Boutique. Her tutoring services have never been in higher demand. “Somebody above knows what they’re doing when they put something in your path,” she says of her job, which is the perfect fit.
Every summer, Smith devotes a couple of weeks to a place that is near and dear to her heart. Camp Horizons is a children’s oncology camp located outside of Nashville, Tennessee. A newly diagnosed Smith attended during the summer between first and second grades and then every year after that until she aged out at 18 and became a volunteer. “I confess to being the cheesiest kid when it comes to camp songs – even at age 33,” says Smith, who helps with arts and crafts and notes that campers can even get chemotherapy treatments during their stay.
Giving back is important to her because brain tumors, which are observed in May, continue to be a major health challenge for many Americans and their families. The National Brain Tumor Society estimates that more than one million Americans (13K+ of them children) are living with a brain tumor, with nearly 100,000 individuals diagnosed each year.
Fortunately, more than two-thirds of tumors are benign; however, even nonmalignant tumors are more likely than any other cancer to have lasting and life-altering impacts on physical, cognitive, and psychological aspects of a patient’s life. Each year, an estimated 18,000+ patients lose their lives to malignant brain tumors. Those who persist face a discouraging 35.7 percent survival rate.
These last facts are the ones that make Smith’s story so inspirational. She manages any lingering symptoms with medications and a positive attitude. Her recent 25th anniversary is a special one for Smith, who tries to share hope, light, love, and joy wherever possible. “When you get down, take a day to be sad and then do what you need to do to start again tomorrow,” she says. “Even if you take 10 medications a day and have to visit the doctor twice a week, do what you have to do. It just becomes your new lifestyle as you count your blessings and make the most of the life you are given.”