on her brain stem, which took four hours to get to the mass itself. On September 8, her neurosurgeon and oncologist were brought into the room, giving the most devastating news Emily’s parents had ever received. ‘Your daughter has brain cancer, which is called medulloblastoma.’ “I remember my parents walking out of the room to talk to the doctor while nurses tried to console me. It seemed like an eternity that they were gone,” said Emily. “I remember my mom holding my hand and just talking to me until I asked what the doctors said. Tears flowed and she told me again what they said.” That same day, Emily received physical, occupational, and speech therapies. She had to learn how to get up, sit on the side of the bed, and take her first steps after surgery. “Things started looking up somewhat. My appetite was getting better, and Chick-fil-A never tasted so good to me, and water,” said Dulworth. “I ate just about anything that was in front of me.” As her strength improved, Emily got up more and sat in the chair provided; her therapies became more accessible as the days and weeks went on. Her speech was also affected after the surgery, which left Emily unable to talk for two to three weeks. Along with this, her balance was also affected. She spent two and a half weeks in the PICU before being transferred to a regular patient floor on September 18, followed by being discharged the next day. “It was a tough transition, but I did okay,” said Emily. On October 6, 2020, Emily went to Barnes-Jewish Hospital to receive 30 rounds of proton radiation and six rounds of chemotherapy. “I also had physical, occupational, and speech therapies every day. My mom and I got to come home on the weekends. We stayed up there during the week. Those were busy weeks and days for me with the radiation, chemo, and all my therapies,” said Dulworth. “I will say this, I tolerated the radiation and chemo well. I didn’t have any problems at all.” On December 29, Emily found herself back at Vanderbilt and received her first in-patient admission, one out of nine cycles of chemo. Fast forward to February 10, Emily had an MRI and received the news after her chemo treatment that there was no evidence of the disease. While Emily’s story is one of victory and strength, many others do not end in celebration of defeating the illness. “Unfortunately, in the United States, childhood cancer is on the rise and the number one disease-related cause of death among children,” said Hayden. “Cancer affects all ethnic, gender, and socio-economic groups.” On average, pediatric clinical trials begin six and a half years after adult trials. Children and adolescents diagnosed with cancer must take outdated treatments or treatments that were developed for adults. “It’s time people realize children are not small adults. Would you dare give your small child adult Tylenol? No, you would give them Children’s Tylenol,” said Hayden. “Our hearts break for children that must take the adult chemotherapy drug, Doxorubicin (Adriamycin). It is referred to as Red Devil by adults and Red Kool-Aid by children.” There are only six specifically FDA-approved cancer treatments for children between the ages of birth and 19-years-old. “There are other options, but these are adult cancer treatments and trials. Children and adolescents endure cancer treatments as far back as the sixties. Most everyone remembers Neil Armstrong, the first man that stepped onto the Moon’s surface in July 1969,” said Hayden. “Neil Armstrong’s daughter, Karen Anne Armstrong, had Diffuse Intrinsic Pontine Glioma (DIPG), an inoperable brain tumor with less than 1% survival rate and a type of cancer that rarely happens in adults.” DIPG is the leading cause of death from brain tumors in 52 SEPTEMBER 2022 | PROMOTING EVENTS THAT MAKE A DIFFERENCE | INTHEVUE.COM
