Callie Weatherford is a super smiley, sweet, happy 6-year-old from South Carolina. She loves giving hugs and sharing her precious grin with others! Callie is a girly girl and loves rainbows and unicorns. She has approximately a million “stuffies” and loves her baby dolls, too. She also loves crafts and making pictures and cards for her friends.
Callie’s parents, Stephanie and Joey, were alarmed when they noticed Callie’s right eye turning inward over New Year’s weekend. She had mentioned her eyes were bothering her, but Stephanie figured it was a post symptom from a recent bout with Covid. An eye doctor examined Callie, then sent the family to get a CT scan to “rule out the scary stuff.” Stephanie’s fears began to set in when the CT scan led to an early-morning MRI.
Afterwards, Callie was feeling well and wanted to go to school. But just as they arrived, the doctor called and asked to see Callie again later that afternoon.
“Her father and I met with the doctor. He showed us the scan and explained that Callie had a tumor in the pons of her brain,” recalls Stephanie. “The doctor contacted a neurosurgeon at the Medical University of South Carolina, and they told us to come immediately. We went home, packed up, said goodbye to our 2-year-old son, and left.”
The next morning, Saturday, January 14th, the Weatherfords’ worst nightmare became a reality. The doctor confirmed that Callie had DIPG and her tumor was inoperable.
“I remember sitting by her bed while she was waiting to wake up from sedation, and I googled DIPG,” said Stephanie.
“The first thing I saw was ‘terminal.’ I put my phone down and told my husband ‘DO NOT google it.’”
Stephanie recalled hearing of a child who had recently been misdiagnosed with DIPG. Still hopeful, she called St. Jude Children’sHospital, desperate for a second opinion.
“I called St. Jude 63 times in one day but finally was able to get an appointment,” said Stephanie. “Unfortunately, our diagnosis did not change, but we did feel a sense of peace at St. Jude and decided to move forward at St.Jude for treatment.”
Stephanie had heard from a friend about My DIPG Navigator, a ChadTough Defeat DIPG Foundation program designed to give families and patients one-on-one support while journeying through a DIPG diagnosis.
“I honestly would be so lost without our nurse navigator, Lauren,” said Stephanie. “She has helped with gathering clinical trial information and has reached out to me at just the right times.”
“Not many people know about this disease, and it’s nice to have someone who I can talk to about it. I also have zero medical background, and Lauren has been so helpful! Initially, she made me feel at peace with the steps that we had taken so far. This has honestly been the best resource by far!”
Callie completed the standard 30 rounds of radiation, and after careful consideration, the family chose to enroll Callie in the Blood Brain Barrier (BBB) Disruption Using Exablate Focused Ultrasound With Doxorubicin for Treatment of Pediatric DIPG out of Children’s National Hospital in Washington, DC. She will only be the second child to participate.
Through every poke and prod, Callie’s smile and sweet personality have been unwavering. She continues to show her family how to get through each day with hope, strength, and bravery.
Birthday: April 6, 2017
Diagnosed: January 14, 2023