Khloe may look like a typical 11-year-old who plays the trombone and loves gymnastics, but inside there’s a superhero who’s been through medical challenges that many adults would find daunting.
The global incidence of childhood NET cancer is approximately 2.8 cases per million children, compared to approximately 7 in 100,000 adults in the US (Neuroendocrine Tumors in Pediatrics, Global Pediatric Health July 2019 by Farooqui and Chauhan). While adults diagnosed with NET cancer find it difficult to find a doctor with extensive knowledge or experience, just imagine the odds for a nine-year-old.
Mom and Dad (LaWanda and Lloyd), Khloe, and brother (Manny) and sister (A’nya) could not have imagined the journey ahead of us… a story that is a remarkable combination of courage, perseverance, science and collaboration between medical providers who have become their extended family.
Khloe has been to multiple states, undergoing treatments with somatostatin analogs and 90Y-DOTATOC radiation until her decision to have a multi-organ transplant, supported by her parents. In 2020, Khloe got a new pancreas and a new liver. Her life in 2021 is filled with weekly doctor visits and daily medications, but she is stretching and preparing to return to her beloved gymnastics.
“She was very sick; something was wrong. Usually, parents feel that something is really wrong, and that’s when your biggest fear comes true when you learn that your daughter or son has cancer. That’s probably the hardest part of my job,” said Dr. Teresa York, a pediatric hematologist and oncologist at the University of Maryland Children’s Hospital.
After scans revealed what York describes as large tumors in Khloe’s liver and possibly something in her pancreas, she ordered a liver biopsy and the diagnosis of neuroendocrine cancer was confirmed. Then York realized she was dealing with a rare disease that usually affects much older adults.
“I was researching John Hopkins and they had never treated a child with NETs, I was researching St. Jude’s and there was nothing in their Children’s Research Hospital. I am not familiar with neuroendocrine tumors. I learned from Khloe,” York said.
“It wasn’t that hard. It took me a few days to understand,” Khloe said.
Lucky moment, coincidence or something else… York’s research on neuroendocrine ended up in her own backyard. A colleague who was a pathology resident at the University of Maryland Medical Center had studied at the University of Iowa and was familiar with Dr. Sue O’Dorisio, the only pediatric NET specialist in the US, maybe even the world . Now the family was on the run from #TeamKhloe… a journey that would take them side by side with Iowa.
Visit https://www.thehealingnet.org/khloes-story to see the videos associated with this first part of Khloe’s story. Readers can click through to parts 2-4 of Khloe’s story from there.