Two years ago, 9-year-old Khloe Cox was on the fast track in gymnastics. After discovering the sport when she was younger, she rose quickly through the competitive ranks, winning awards while following in the footsteps of her hero: Olympic gold medalist Simone Biles.
But everything changed in 2018. On her first day of level two practice, Khloe’s parents LaWanda and Lloyd Cox got a call from her coach. Khloe had fallen ill with a fever and abdominal pain. Her parents took her to the pediatrician, then urgent care, then to a nearby emergency room, where the doctors found multiple lesions on Khloe’s liver.
In the end, the Cox family received terrible news. Khloe had a rare form of cancer, a stage IV neuroendocrine tumor. This cancer, most often seen in older men but almost never in children, had started in Khloe’s pancreas and spread to her liver.
Her best hope would be a dual liver-pancreas transplant. If performed, the surgery would be the first known procedure of its kind to treat a neuroendocrine tumor in someone so young.
Because of the complexity involved, the surgery could only be performed by a small number of experts worldwide – including Transplant Surgeon Srinath Chinnakotla, MD, at M Health Fairview University of Minnesota Masonic Children’s Hospital.
Before her diagnosis, Khloe was just like many other kids her age. The third-grader from Baltimore, MD, enjoyed arts and crafts and spending time with her parents, her older sister Nya, and her older brother Manny. But her life – and the lives of her family members – soon took on another dimension. The next two years became a blur of specialist appointments, cancer treatments, and plane flights, as the family traveled between hospitals in Maryland, Washington D.C., and Iowa for Khloe’s care.
Khloe initially received care from a top cancer specialist at University of Iowa Stead Family Children’s Hospital to stabilize the cancer. But surgery to remove her tumors wasn’t possible – there were just too many of them. Khloe’s father volunteered to donate part of his liver to Khloe, but that wasn’t an option, either. The chance of the cancer coming back was too high. Khloe needed a double transplant – she needed a new liver and a new pancreas.
Only several children’s hospitals in the United States are even equipped to perform this procedure – which is known medically as a radical total pancreatectomy with a hepatectomy, followed by a multiple organ transplant.
After waiting on a transplant list for a year at Medstar Georgetown University Hospital in Washington D.C., Khloe’s oncologist in Iowa referred the family to Chinnakotla, who is the clinical director of pediatric transplantation at M Health Fairview University of Minnesota Masonic Children’s Hospital.
The family met Chinnakotla in January 2020. The next week, Khloe was listed for transplant.
On Aug. 4, 2020, the family got the call they had been waiting for: donor organs were available for Khloe, now 11 years old. They hurried back to Minnesota to prepare for the transplant.
The surgery took just under 12 hours. Shortly after 3 a.m., Lloyd and LaWanda got good news. “We felt such relief, hearing that the surgery had been successful,” Lloyd said. Now, it was time for Khloe to heal.
For the next two months, Khloe’s parents were at her bedside 24 hours a day as she recovered. “During this whole process, Khloe has been so strong. She has been my strength; she has been our strength. She helped us navigate this path,” Lloyd said.
But even during their moment of joy, the Cox family felt an undercurrent of grief: Khloe’s organ donor had been a four-year-old. “For another family to make a decision in the midst of their grief – there are no words,” said LaWanda. “It saved Khloe’s life. The way that the organs are working for Khloe – it was a perfect match.”
Chinnakotla – or Dr. C, as his patients call him – was by their side every step of the way. “Dr. C is amazing. He is a very intelligent guy, but so down to earth. Each patient gets his total focus,” LaWanda said. “We trust him.”
A team of nurses, specialists, and experts at M Health Fairview University of Minnesota Masonic Children’s Hospital helped as well.
“Everyone at the children’s hospital was amazing,” LaWanda said. “I really loved that they allowed us to have input. Even though we’re not experts, we do know our child. They always made us feel like we were part of the team.”
“Our team was happy that the Cox family chose M Health Fairview University of Minnesota Masonic Children’s Hospital for Khloe’s surgery, against the backdrop of not only COVID-19, but also the protests across the Twin Cities in response to George Floyd’s murder,” Chinnakotla said.
On Thursday, Oct. 15, Khloe and her parents boarded a flight back home to Baltimore, where they will be reunited with Khloe’s sister and brother. After this journey, Lloyd said, “I’m looking forward to having all of our family back together, just sitting in the living room and talking.”
Looking ahead, Khloe’s future is bright. “For Khloe’s future, there are no limits. From gymnastics to starting a family later in life, whatever Khloe wants to do, she can do it,” Lloyd said.