CURE Blog

Carrie and Tom Pinotti remember the moment, the bolt out of nowhere, the helplessness. In 2006, their tumbling, heart-stealing twins, Julia and Claire turned two. The family’s trip to New York and Pennsylvania for Memorial Day was free of ear aches and kid calamities. Until Julia began throwing up, and wouldn’t stop.

An ER visit first showed pneumonia. Julia complained of headaches. A CT scan revealed that Julia’s head was filling with spinal fluid – Hydrocephalus.

Brain surgery was imminent. Little Julia was helicoptered to Children’s Hospital in Philadelphia, while Carrie’s and Tom’s fears climbed certainly higher. After surgery and a CT scan, the neurosurgeon discovered the hydrocephalus was not genetic, but caused by a brain tumor. Located on the brain stem. And deemed inoperable. Dangerous as it was, the risk outweighed the inevitable. A craniotomy was performed to determine the type of cancer the Pinotti’s were facing.

The diagnosis crushed their hearts. Julia had an AT/RT, Atypical Teratoid Rhabdoid Tumor. So rare, only 30 such cases a year are diagnosed worldwide. Julia was given less than 10% chance of survival. Their hopes were bludgeoned. But Carries and Tom were defiant. They refused to let Julia, s young in her life, simply live out her fading few months. They enrolled her in the first ever AT/RT clinical trial. She was the 19th out of 20 children enrolled. Fortunately for the Pinotti family, Children’s Healthcare of Atlanta is one of 12 hospitals in the country participating in the AT/RT trial.

And so it began.

The treatment was described as unbelievable harsh. Lasting 52 weeks. 10 types of chemotherapy. Week after week of intense radiation. With the grim, implacable probability that Julia would not survive. Was God still listening?

For 15 months, the journey for the Pinotti family was a dogged travail through treatments, ER visits, cruel setbacks and seizures for courageous Julia. Against monstrous odds and a most insidious cancer, the 2-year-old wisp of a girl survived.

Now Julia is enjoying 3rd grade with her twin sister Claire. Loving the life that loves her.

“One emotion we never experiences throughout Julia’s treatment was being alone in this journey,” says Carrie. “Compassion was overwhelming from family, friends, church, co-workers, even strangers. CURE spread the word about our situation from the start and set up a meal calendar so I never cooked dinner for 14 months. They made us feel normal – away from cancer. We are blessed to have a top-notch children’s hospital and organizations like CURE to represent and fight for our children.”

Julia is a 6-year cancer survivor. She and Claire came into this world as a set. And Julia wasn’t going to let anything break it up. You don’t argue with a 2-year-old. Cancer tried.