LaWanda and Lloyd Cox knew immediately something was wrong. They could see it in the face of the Baltimore County emergency room doctor as she pressed on their 9-year-old daughter’s stomach.
This wasn’t the flu or a virus “that would have to run its course,” as other doctors first thought. This was more serious. After a sonogram revealed lesions on the girl’s liver, she was whisked away by ambulance to the University of Maryland Children’s Hospital.
The diagnosis was excruciating: Their daughter, Khloe, had a rare cancer that usually affects people older than 50. “This has to be a nightmare,” Lloyd Cox recounted thinking Thursday as his daughter, now 11, sat sandwiched between him and his wife on a couch at the Ronald McDonald House in Minneapolis. “I wanted someone to wake me up and tell me it wasn’t true.”
After coming to grips with the diagnosis and making the rounds to medical specialists, they found hope in Minnesota and a first-of-its kind transplant surgery that may not only give their daughter a longer life but also help other cancer patients.
Khloe’s diagnosis was for the same type of cancer — a neuroendocrine tumor — that struck down Apple founder Steve Jobs. It’s rare in adults and even more so in children.
The cancer that started in Khloe’s pancreas had spread to her liver. Specialists at the University of Iowa Hospitals and Clinics began a treatment course to stabilize the cancer. But it wasn’t going to cure it, said Dr. Srinath Chinnakotla, surgical director of liver transplantation with M Health Fairview.
Khloe’s dreams of growing up to be a NASA scientist would likely be cut short unless they could replace her pancreas and liver.
Chinnakotla had performed one other dual pancreas-liver transplant, but this would be the first time it would be done to treat this type of cancer. The risks would be high.
“The kind of work I do is highly complicated,” he said. “The mortality for this type of complex surgery is high.”
It’s even riskier with a child. “With a child, all the connections are small, so the surgery has to be done with great precision,” Chinnakotla said. “There’s no room for error.”
Despite those risks, the transplant surgery seemed to be Khloe’s best hope.
“When you have a 10-year-old child with an advanced cancer, you’re trying to do everything for them to the fullest extent possible,” Chinnakotla said. “This is like a Hail Mary pass … to take out the cancer.”
In an effort to stay closer to their Baltimore home, the family had hoped to have the transplant done at MedStar Georgetown University Hospital in Washington, D.C. But a year on the organ transplant list there passed without an offer.
“We didn’t want to go another year,” Khloe’s mother said. If the cancer began to spread, Khloe might be taken off the list.
So in December 2019, the family contacted Chinnakotla’s medical team in Minnesota and flew out to meet him the next month. On Feb. 4, Khloe was placed on the hospital’s transplant list.
Being on both lists would double the family’s chances of getting what they hoped was a lifesaving procedure for Khloe.
Months of waiting took a toll. But faith, family and Khloe’s strength sustained them.
When the call from Minnesota came in July that a donated organ was available, Khloe’s parents wrestled with a mix of emotions.
“I was scared,” said Lloyd Cox. “I had been praying that we might not need a transplant.”
The treatment Khloe had been receiving had stabilized the cancer. “She was doing well,” her father said. “Maybe we just needed to give it more time.”
But Chinnakotla offered strong reassurance. “I felt in my heart that if anyone could do this surgery, Dr. C was the one,” LaWanda Cox said.
So the family flew to Minnesota — only to find out that the match wasn’t quite right and the surgery a no-go.
It was disappointing, and yet Lloyd Cox couldn’t help but be a little relieved, because COVID-19 restrictions at the hospital limited visitors to one parent. That left him sitting in a rental car outside the hospital entrance.
They returned to Baltimore to wait for yet another organ donation. By August, when the call came, they felt ready. “July was sort of a dress rehearsal,” Lloyd Cox said. The hospital’s COVID-19 rules also had changed, allowing both parents to be at their daughter’s side.
On Aug. 4, Khloe was wheeled in for the 10-hour surgery. In the waiting room, her parents paced and prayed.
Khloe was receiving the pancreas and liver of a 4-year-old boy. It was a gift that came amid someone else’s grief. “It’s such a selfless thing to do,” LaWanda Cox said. “We’re so grateful.”
On Thursday, after two months in the M Health Fairview University of Minnesota Masonic Children’s Hospital, Khloe was free to return to Baltimore to begin life as kid again.
She’ll take medication for the rest of her life to prevent her body from rejecting the new organs and will be frequently checked to ensure the cancer doesn’t return.
“Typically, when cancers come back, they do so in the first two years,” Chinnakotla said. “If she can get past that two-year mark, then she should be able to go into adulthood with no problems.”
“She’ll have no restrictions,” he added. “She can do whatever she wants. … The fact that Khloe made it through this is not only good for her, but it gives hope to other children who can say, ‘If Khloe can beat cancer, then we can.’ ”