ROCKLEDGE, Fla. – 7-year-old Vivian Sleeth likes to hug others and loves dinosaurs. But in May, the girl’s parents noticed something different.
“We were on vacation in Fort Myers, and it was us looking at her, and she was looking at the TV just weird. It was just a different look,” Sleeth’s stepfather, Mark Huetter, said.
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Vivian was soon taken for an eye exam — a doctor visit that resulted in more medical tests, including a brain MRI.
Within a week, the sweet and vibrant girl was diagnosed with diffuse intrinsic pontine glioma, or DIPG.
“There’s limited guidance, and it’s like you’ve kind of been told a horrible diagnosis and go home and make memories. There’s nothing we can do,” Brittany Sleeth, Vivian’s mother, said.
DIPG is a rare, terminal pediatric brain-stem tumor that’s typically diagnosed in children ages 5 - 9 years old. It’s an aggressive and difficult-to-treat brain stem tumor.
Survival rate is low, and surgery is rarely an option. Treatment includes radiation and chemotherapy.
“We just try to remain faithful, and she prays — and she prays amazingly well for a 7 year old — and just knows that God’s got this, and that’s all we can do. And we just keep moving forward and hoping we find the cure,” Brittany Sleeth said.
Doctors gave Vivian Sleeth an estimated 6 - 9 months left to live.
Her parents are fighting the prognosis with sonodynamic therapy, a clinical trial in Washington, D.C.
“It’s amazing technology. Basically, they just give her a drug that goes into her arm as if you’re getting regular blood drawn,” Huetter said.
Doctors then place a special cap that needs to be secured on her skull.
“It has four pins, so they’ll have two in the front, two in the back, and they drill it — well, screw it — into her skull to make sure it’s tight,” Brittany Sleeth explained.
A laser and the medicine will then target the tumor and attack the bad cells.
The couple said they’re sharing their story to spread awareness of the rare cancer and hope more federal funding will go into childhood cancer treatments.
“How is there not a cure when it’s been around for so many years? Why is there not enough money for a cure? So it’s (a) very difficult, very difficult conversation to have,” Brittany Sleeth said. “It’s not OK and not going political, but something has to be done. Like, the word needs to get out, and someone needs to make a difference and put your children first. Put your children in our shoes and know that this isn’t OK and that they deserve a right to live.”
Before the trial ultrasound procedure, the 7-year-old girl had to shave her blond locks off, which is something she didn’t look forward to.
But she got support from family, friends and strangers with the Brave the Shave event, where her supporters shaved their hair off, too.
“She popped her gum the entire time, like, she didn’t shed a tear. She was holding my face, she was wiping my tears, like, she is so strong and incredible that she just deserves a chance…” Brittany Sleeth said as she fought back tears.
A GoFundme page was set up by a family friend to help them with medical expenses and help with any experiences Vivian wants to live. To donate, click here.
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