Saving Sweet Savannah

The gold ribbons adorning poles along the uptown Hillsboro area serve a purpose other than decoration. September is Childhood Cancer Awareness Month, and the ribbons are out this month to bring awareness to the disease that affects thousands of families each year – with one little girl from Highland County in mind.

On March 15, 2013, Savannah Tong, then 3, was diagnosed with a very large brain tumor. Three days later, the tumor was removed at Dayton Children’s Hospital. In April, doctors discovered it was an extremely rare and very aggressive type of cancer – stage three ependymoma, a malignant brain tumor most commonly found in children, often under age 3.
   
Savannah underwent surgery to remove the tumor and received 33 consecutive radiation treatments in Bloomington, Ind.
   
A year and a half later, Savannah’s father, Travis Tong, said that Savannah is “overall doing pretty well.”
   
“The biggest issue is still the effects of radiation, since she had so much of it,” Tong said. “She’ll be dealing with it for a couple years.”
   
Tong said “there’s days you wouldn’t know that anything was ever wrong with her,” but in addition to the effects of radiation, Savannah still has problems from the tumor’s impact on her brain.
   
“Her doctors said it’s going to be hard to tell the difference between a 4- or 5-year-old girl throwing a fit because she’s a 4- or 5-year-old girl, and the part of her brain that’s been affected,” Tong said. “She can be in the best mood, and it can change with the drop of a hat. It’s a very challenging thing for us, as parents, to judge which is which.”
   
Tong said that Savannah’s cancer has an 80-percent chance of recurrence, which means she still has frequent doctor’s visits for CAT scans and checkups. Her next set of scans at the Dayton Children’s Hospital will be done Sept. 23, and Tong said she will be getting scans on both her brain and spinal cord.
   
“Most cancer patients will go for scans every three months, and then in two years it’ll change to every six months,” Tong said. “Hers, for the rest of her life, will be every three months because her cancer is so rare, so aggressive, and the probability of it coming back is so great.”
   

Tong said that Savannah is “a trouper,” but she has to be placed under anesthesia each time she goes in for scans. This is still an improvement over her cancer treatment, which was much harder.
   
“When we went for her seven weeks of radiation treatments, it was five days a week, and they had to put her to sleep every time,” Tong said.

Savannah just turned 5, and the little girl who has beaten cancer, MRSA and other infections got some good news late this August.
   
When Savannah was 3, she was nominated by another individual for A Special Wish Foundation. As part of their application, Savannah and her family had to provide her top three wishes.
   
“When they sent us the form, she was only 3,” Tong said. “I always told her and my son about when I went on my senior trip down there, my whole class got our picture done at the back of Cinderella’s castle. Every time they see a Disney movie, they would say ‘we want to go!’ She loves the princesses, so we figure this would be perfect for her.”
   
In August, Savannah and her family learned that her wish had been granted. Savannah, along with her parents, Travis and Billie, and her brothers Dallas, 17, and Hayden, 6, were treated to a weeklong vacation at the beginning of September.
   
Tong said the trip was “amazing.”
   
Tong said that Savannah couldn’t wait to meet Cinderella and Rapunzel, who Savannah admires for her long hair, since she lost her own long hair during her cancer treatments. She was the “guest of honor” during a live Beauty and the Beast show at Disney World, where Belle and the Beast presented her with a rose at the end of the show.
   
In addition to Disney World, Savannah and her family visited Universal Studios, EPCOT and SeaWorld, where she fed dolphins.
   
As part of Savannah’s dream vacation, she and her family stayed at Give Kids the World Village, a “70-acre ‘storybook’ resort with over 144 Villa accommodations, entertainment attractions, whimsical venues and fun specifically designed for children with special needs,” according to the organization’s website. Give Kids the World grants families a magical
weeklong vacation, free of charge.
   
“It is so amazing. They only have around 35 staff members,” Tong said. “Fifteen hundred to 1,800 hours a week are all volunteer, and people come from different countries to volunteer for a week or two at a time. It’s phenomenal.” 
   
A different volunteer – Madelyn Colatruglio, an elementary school student from Tiffin, Ohio – made sure Savannah had a special welcome back to Highland County. Colatruglio, who raises money and awareness year-round through her volunteer efforts and her Maddy’s Heart Relay for Life team, and her mother traveled three hours to decorate four blocks of uptown Hillsboro with gold ribbons to surprise Savannah. The Colony Theatre marquee also read “Welcome Home, Sweet Savannah” in her honor.
   
“We’re a part of a special community now,” Tong said. “We follow a lot of families on Facebook, and they follow us.”
   
The goal of Childhood Cancer Awareness Month “is to put a spotlight on the types of cancer that largely affect children, survivorship issues, and – importantly – to help raise funds for research and family support,” the ACCO states on their website, acco.org.
   
“The one harsh fact, which is why Childhood Cancer Awareness Month is so important: Of all the millions of dollars that get raised every year for cancer research, four percent goes to pediatric cancer research,” Tong said.    

“It’s always the excuse that it’s so rare, and that’s why only four percent goes, but seven kids die a day from cancer in America. How rare can it really be?”
   
The American Childhood Cancer Organization states that “15,780 children under the age of 21 are diagnosed with cancer every year; approximately 1/4 of them will not survive the disease.”
   
Tong said while he appreciates the families who go on TV and spread awareness, he and his family are “not ever wanting to go after the limelight” for Savannah or themselves. However, on a local level, Tong said he would love it if Savannah could be viewed as the “poster child for Highland County” for childhood cancer awareness, just to help people realize “it can happen to you.”
   
“The reason why we want to do it is the early detection, the early signs,” Tong said. “You see commercials all the time for the signs of a stroke or a heart attack, but people need to know the signs of a brain tumor or any type of cancer.”
   
The Cure Childhood Cancer organization points out that there are over 25 types of childhood cancer, and each one presents itself differently and may require different treatment types. Tong said he hopes to help “it hit home to everyone to pay more attention to your kids” and seek medical attention if something seems unusual.
   
For Savannah, everything happened quickly. Tong wrote on the “Saving Sweet Savannah” Facebook page that on a Tuesday, Savannah was vomiting, and she complained of a headache on Wednesday. Her parents also noticed that the right side of her mouth was drooping and scheduled a doctor’s appointment.
   
Two days later, Savannah’s pediatrician sent the family to the Dayton Children’s Hospital for a CAT scan, where they found a massive brain tumor and admitted Savannah immediately. That following Monday, Savannah underwent surgery to remove the tumor, and she was diagnosed with cancer two weeks later.
   
“They told us we were very fortunate when we caught her symptoms, because her tumor was a quarter the size of her brain,” Tong said. “They said it was a miracle she was walking and talking and not going through seizures. There was nothing leading up to it. It was just the one time, we took her to the doctor and boom, we were in the hospital.”
   
Tong said that if “even one person was affected positively” by being inspired to research the signs and symptoms of pediatric cancer, “it’s worth it.”

“I feel like God has a special plan for her,” Tong said. “That’s why she was chosen, and she’s going to do big things.”
   
Tong also thanked the community for their prayers and help.
   
“Thank you to everyone in Highland County, and Lynchburg, who has supported us,” Tong said. “It’s definitely a great community to live in.
   
“I appreciate all the Tallboyz customers who come in and ask about her and say that she’s in their prayers, too.”