Sara is a second-grader at Perkins Elementary in St. Petersburg. She is also a little girl fighting for her life.
For the third time in six years, Sara is battling brain cancer.
Sara was diagnosed with desmoplastic infantile ganglioglioma, a rare brain cancer, as an infant after she had a seizure. For two years, she received aggressive treatment that included chemotherapy and two surgeries to treat a rapidly growing tumor. She was treated at All Children's Hospital in St. Petersburg and the Preston Robert Tisch Brain Tumor Center at Duke University in North Carolina.
In July 2007, doctors told the family that the tumor had disappeared. However, during an MRI in 2009 when Sara was 4, doctors spotted the cancer again. Sara underwent 22 more rounds of chemowtherapy.
That time, the tumor did not disappear entirely, but in May 2011, doctors said the cancer was dormant.
"The cyst that had appeared (in 2009) was still there, but it was basically dead. They called it dark,'' explained Sara's mother, Laura McCaslin, an oncology nurse for Florida Cancer Specialists in St. Petersburg.
The discovery that the cancer was active again came during a routine MRI in April.
"Because of my work and what I know, it is hard. I know what can happen," said McCaslin, 37. "In 2009, I knew it could come back.''
"Sara's case is rare,'' said Dr. Stacie Stapleton, director of pediatric neuro-oncology at All Children's Hospital. "Sara has tolerated all the chemo she's received so well. She is strong and outgoing and keeps taking what is given her.''
However, because she has already received so much chemotherapy, doctors advised McCaslin and her husband, Erik Clifton, to consider a different approach this time. Dr. Sri Gururangan at Duke University, who first began monitoring Sara when she was 1, encouraged the family to look into a clinical trial at Children's Hospital of Pittsburgh.
Because of a particular cancer marker in Sara's case, she was able to enroll in the trial, officially known as the "Pilot Study of Glioma Associated Antigen Vaccines in Conjunction With Poly-ICLC in Pediatric Glioma.''
The treatment uses the body's immune system to try to kill the tumor, rather than using chemotherapy or radiation therapy, according to the hospital. The trial could last up to two years.
Sara, 7, now must travel to Pittsburgh every three weeks, where she receives two shots. The first shot is an experimental vaccine targeting the cancer cells. The other is a shot to boost her immune system.
After each round of shots, McCaslin must monitor Sara for 72 hours, watching for fever — just as parents do when their child receives more typical childhood vaccinations. When she returned home from her second trip on Sept. 14, Sara's fever spiked to about 102 degrees.
"I took some purple stuff for it,'' explained Sara.
"We alternate Tylenol and ibuprofen around the clock to keep it down for the three days,'' McCaslin said.
When it comes to explaining to Sara and Seth why the trips are necessary, the family, including maternal grandmother Bonnie McCaslin, avoid saying the word "cancer" when Sara is present.
"My daughter wants to keep Sara away from stress the best she can,'' said Bonnie McCaslin. "So the way it's been explained is that there's something shaped like a bean in her brain, and that the doctors need to take care of it.''
When Sara is asked to talk about her visit to Children's Hospital of Pittsburgh, she takes a moment, collecting her thoughts.
"I went to Pittsburgh and got two shots,'' she said. "Yeahhhhh, they hurt, but I had to get them because of the bean in my brain.''
And when she is asked if she thinks some of the hospital procedures, like MRIs, are scary, she quickly shakes her head no.
"It's not scary. It's just a loud tunnel, and I have to go in it because of the bean.''
When Sara had her last MRI and Laura McCaslin received the news that the cancer had returned, she called her mother right away.
"I answered the phone, and Laura really didn't have to say anything. I knew it was bad. We were just devastated,'' Bonnie McCaslin said.
The family has health insurance. However, they have lost wages because of so much time off for doctors' visits and trips out of state. And airfare and hotel stays are expensive. So Bonnie McCaslin's boyfriend, Paul Newman of Largo, decided to hold a fundraiser.
"A few weeks ago, Bonnie and I were at dinner, and I knew how worried the family was. I told her that I wanted to hold a dinner party at my house and raise some money,'' Newman said. "But then I started calling my friends, and everyone wanted to get involved. Eventually, it was so big, we realized we couldn't hold it at my house.''
Contact Piper Castillo at [email protected] or (727) 445-4163.