This Is What Pediatric Cancer Looks Like

“Charley was born on Aug. 13, 2013. She was healthy and beautiful with 10 fingers and 10 toes. Charley was the happiest baby I’d ever seen. She was perfect! At 2 months old, I started to think she was a little on the small side. I asked her doctor and he said that she was fine, she may just be a small child. At 3 months old, I was even more concerned and took her back to the doctor’s office, and in fact she had lost weight from her last visit. We then started trying to figure out what was causing her weight loss.

“After many tests and scans, they found a mass in her brain. We were flown to Children’s of Alabama in Birmingham. There they did a biopsy and on Dec. 3, 2013, Charley was diagnosed with brain cancer, an inoperable brain tumor — pilocytic astrocytoma — and an extremely rare neurological disorder called diencephalic syndrome. Diencephalic syndrome is usually caused by a brain tumor such as a low-grade glioma or astrocytoma. 

“A year into treatment, Charley’s tumor had grown so much that she needed brain surgery to remove some of the tumor to save her life. That surgery was about 13 hours long. They were able to remove 60 percent of the tumor, which was more than they had expected. Charley completely lost her sight in that surgery, but it saved her life and that’s what matters most. It hasn’t slowed her down or bothered her at all.

“Charley has had a total of 13 surgeries — seven of those were brain surgery and two of those were major brain surgery. She has been under anesthesia 32 times and counting. At 5 years old, she has been on chemo treatment all but six months of her entire life. On her fifth birthday, she received her 129th dose of chemo.

“Charley is a special little girl not only because of how strong and resilient she is but because of how much love and happiness she spreads. She has made more of an impact on the world in her five years than the average person does in an entire lifetime. Her over-the-top bubbly personality is infectious. She is truly one of a kind, and I am so proud to be her mother.”

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