Ten years ago she was diagnosed with cancer. Now, one young survivor helps other kids going up against cancer through Thea's Star of Hope.
Each year, more than 10,000 children are diagnosed with cancer. In October 2007, Thea Danze was among the youngest to join their ranks, when doctors diagnosed her with a brain tumor. She was just four months old.
Her mother, Trisha, remembers thinking at the time, “Now we’re one of those families that you hear about and you think, ‘God, I don’t know what I’d do.’”
Trisha and her husband, Jeffrey, had no inkling there was anything wrong with Thea when she was born in July 2007. By all appearances she was a perfectly normal, healthy baby.
But four months later it became obvious there was a problem. “The first thing we saw was her eyes wiggling,” Trisha Danze says. “She wasn’t sleeping. She was screaming. I can look back now and say she never really slept well and she was a fussy baby. Those were probably signs. But nobody’s going to pick that up in a baby.”
Their pediatrician at first told them the eye wiggling – called nystagmus – was nothing to worry about. Thea would eventually grow out of it. Danze wasn’t convinced.
The family visited the pediatric ER at Capital Health in Trenton, N.J., for a brain scan to make sure nothing was wrong. What was supposed to be a quick visit turned into a months-long ordeal.
“The words are all a blur, but there are certain things that will always stick in my mind,” Danze says. “After Thea had the scan and the nurse came in, she was visibly upset. That’s when you know things aren’t good.”
The doctor put Thea’s scan up on the screen. “There was no mistaking it,” Danze says. “It was huge. There was almost more tumor than brain.” Thea needed surgery right away.
An emotional journey
The family traveled to Children’s Hospital of Philadelphia (CHOP) for Thea’s treatment. Only after doctors had operated could they see what they were dealing with – and even then the diagnosis wasn’t clear. “They sent out the frozen slide, and that came back as a very aggressive malignant tumor,” says Danze. “The final pathology five days later (we sweated it out for those five days) came back that it was fairly benign and slow-growing. So we went through the gamut of emotions.”
Surgeons were only able to remove about half of the tumor because it was wrapped around her carotid artery – the major artery that supplies blood to the brain and face. Two days later, the blood vessel ruptured and Thea had a major stroke. She spent a month in the hospital recovering.
Once Thea was well enough, she started chemotherapy to attack the tumor that remained in her brain. She’s had to get chemo consistently every four weeks to prevent the tumor from growing again.
Thea’s treatment has stalled her tumor, but doctors don’t know what effects it might have on her body. As chemotherapy kills cancer cells, it also destroys normal cells that are critical to a child’s growth and development. “Unfortunately, we don’t know what all those drugs are doing to her long-term,” Danze says.
Thea’s Star of Hope
Five years ago, a children’s boutique near the Danze’s home in central New Jersey offered to host a fashion show to raise money for Thea’s treatment. Other friends also volunteered to do fundraisers on her behalf. “We said we didn’t need the money, but we wanted to pay it forward and give it to research,” Danze says. The family donated the money to CHOP.
Then they had an idea. Why not use the money they raised to start a foundation? “We thought, ‘This is how they can help us, and help other kids in the process,’” Danze says.
The family founded Thea’s Star of Hope in 2014, to help other kids with brain tumors live longer – and stay healthier. “Our goal is to really have an impact on the research and help fund the programs that are going to bring about better, more effective, less toxic treatments for these kids.”
To date, the organization has raised close to $150,000 through an annual gala, 5K run, and other events. The money they’ve raised has gone to support research projects through the Children’s Brain Tumor Tissue Consortium, a collaborative effort that brings together 15 different research institutions (including CHOP) to investigate new treatments for pediatric brain cancer. “This is the pediatric version of Joe Biden’s Cancer Moonshot. It’s going to really help speed discoveries and find cures for these kids,” Danze says.
When it comes to the charity that bears her name – “Thea loves it. She loves the spotlight,” her mother says.
A new normal
Ten years and five different chemotherapy protocols later, the tumor is stable – but still there. Thea deals with it as stoically as a 10-year-old can.
“Overall she’s doing great. Her strength is really good. She can go to school, which is amazing,” Danze says. “We’re trying to give her as normal a life as we possibly can, but she’s doing really well.”
October 02, 2017
Janet O’Dell, RN