Khloe may look like a typical 11 year old who plays a trombone and loves gymnastics but inside there’s a super-hero who has been through medical challenges that many adults would find daunting.
The world-wide incidence of NET cancer in children is around 2.8 cases per one million children as compared to approximately 7 in 100,000 adults in the U. S. (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, imagine the odds for a 9 year old.
Mom and Dad (LaWanda and Lloyd), Khloe, and brother (Manny) and sister (A’nya) could not have imagined the journey ahead…a story that is a remarkable combination of courage, perseverance, science and collaboration among medical providers who have become their extended family.
Khloe has been to multiple states, undergone treatments with somatostatin analogues and 90Y-DOTATOC radiation up until HER decision to have a multi-organ transplant, supported by her parents. In 2020 Khloe received 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 for a return to her beloved gymnastics.
KHLOE AT AGE 9
KHLOE “AT WORK” AT THE GYM before surgery
Warning Signs: Dad and Mom, Lloyd and LaWanda, explain how their otherwise healthy daughter, who saw a pediatrician regularly, had unexplained periods of stomachaches, vomiting, and fever over the years.
Dr. teresa York, pediatric hematologist and oncologist at the universty of Maryland children’s hospital
L-r brother manny, Khloe, and sister a’nya.
“She was very sick; something was wrong. Usually parents have a feeling when something is really wrong and then your greatest fear comes true when you are told your daughter or son has cancer. That is probably the hardest thing about my job”—Dr. York
After scans revealed what Dr. 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. That’s when Dr. York realized she was dealing with a rare disease that usually presented in much older adults.
“I was researching John Hopkins, and they had never treated a child with NETs, I researched St. Jude’s and nothing was at their Children’s Research Hospital. I’m not familiar with neuroendocrine tumors. I have learned from Khloe.” —Dr. York
Dr. york came to the er to meet khloe and her family
Diagnosis: Lloyd and LaWanda had never heard of neuroendocrine tumors but Dr. York assured them she would research for answers. The answer came in a surprising way.
“It was not that hard, it took me a few days to understand.” —Khloe
Lucky break, coincidence or something else…Dr. York’s research into neuroendocrine landed in her own backyard. A colleague who was a pathlogy resident right there at the University of Maryland Medical Center had studied at the University of Iowa, and knew of the work of Dr. Sue O’Dorisio, the only pediatric NETs specialist in the U. S., maybe even the world. Now the family was off and running for #TeamKhloe…a journey that would take them next to Iowa.
l-r manny, lloyd, a’nya, lawanda with khloe in zebra jacket
Pediatrics net specialist Dr. sue O’dorisio (blue) examines khloe at the university of iowa medical center.
