Caroline Ford is mom to Burkley Ford, a fun-loving and active child. In February 2021, when Burkley was just three years old, she began showing signs that something was not right with her health.
Burkley and other family members had been sick with COVID-19 the previous month, but Burkley did not seem to be fully recovering. Caroline explained that she wasn’t quite herself — she was eating less, her stomach hurt, she was tired all the time, and she started to have blood in her urine. She took her daughter to the doctor, thinking that it might be a urinary tract infection. However, an ultrasound showed a large, 16 cm tumor had taken over Burkley’s left kidney.
Burkley went on to be diagnosed with Neuroblastoma, a rare cancer that develops in nerve tissue. The tumor had destroyed her left kidney and spread to some lymph nodes and her bone marrow. At the Children’s Hospital at MUSC in Charleston, SC, Burkley had radical nephrectomy surgery to remove her affected kidney, along with the cancerous tumor. Her post-surgery treatment included six rounds of chemotherapy and a bone marrow transplant. She also received radiation to the tumor site and the surrounding area in Jacksonville, FL. Following radiation, she did five months of immunotherapy cancer treatment. By June 2022, there was no longer any evidence of cancer in her body.
Once the cancer was gone, Burkley participated in a clinical trial to prevent the recurrence of neuroblastoma. She took nine pills a day for two years (2022-2024) as part of the clinical trial. (This treatment, Ilwilfin, has sincebeen approved by the U.S. Food and Drug Administration. http://bit.ly/40bxr7V)
Today, Burkley continues to follow a maintenance protocol. She has lab work done every three months, hearing tests every six months (due to the effects of chemotherapy), and echocardiograms every six months. In addition, she now sees a nephrologist to monitor her single kidney.
Throughout the years, Caroline and her family have received tremendous support from family, friends, coworkers, their church, and various non-profits, for which she is forever grateful. When Burkley was first diagnosed, her other child, a son, was just 18 months old. Both grandmothers stepped in to help take care of him. Sometimes Caroline and her husband would be gone for days or weeks to get Burkley the treatment she needed.
During the weeks Burkley was in the hospital for her bone marrow transplant, a parent was required to be at the hospital at all times. Caroline and her husband split the days there, but they could not have done it without all the support around them.
“The meals, the care packages, the gift cards and vouchers, the emotional support – it all meant so much to us.” They also had a lot of support from the doctors, nurses, and social workers. Caroline says that one non-profit even covered their hospital parking garage fees (Cancer Partners of the Carolinas). Caroline states, “At one point, Burkley was in-patient for seven weeks straight. The drive was over an hour to the hospital one-way – we did not have to worry about paying for gas or meals on the road.”
Today, Burkley is now a healthy and sweet seven-year-old. Caroline states, “She’s pretty remarkable. Burkley lives life to the fullest!” She plays soccer and basketball. This summer she is excited to be attending her first-ever sleepaway camp for two nights - approved by her oncologist, of course! Next school year, she will be in the second grade.
While she does not have any restrictions due to her single kidney or health history, Caroline shares that they do focus on staying hydrated to help her sole kidney do its job. Additionally, Burkley does have chronically elevated creatinine levels. Her one kidney has enlarged to compensate for the lost kidney.
The family celebrates her Bone Marrow Transplant Day each year, just as they do her birthday. They talk openly and often about her one kidney. Burkley thinks it is interesting to find other people who also have one kidney and has started a club to keep track of everyone she meets who is like her. She’s named it the “One Kidney Club.”
In a video that Caroline and Burkley prepared for AAKP about her One Kidney Club, Burkley says that she created the club to help people with one kidney feel special and loved. “Everyone is sweet and kind in my One Kidney Club. I hope everyone that is in my One Kidney Club is so happy and feels special. Whoever has one kidney can be in my club.” (Watch her video: https://bit.ly/Burkley-OneKidneyClub)
Her club is growing and now has several members, including her grandfather (who had his kidney removed due to cancer), her mom’s work friend, her dad’s friend, a visiting Bishop that is part of her church and his wife (a living donor), and a few other friends of the family. Caroline says, “Burkley is always looking for new members. She gets really excited when she meets someone who is unique with one kidney like her. She has enjoyed relating to others, and she finds it interesting that they all have different reasons for having one kidney.”
Additional Resources:
AAKP's Pediatric Kidney Pals: https://bit.ly/PediatricKidneyPals
This article was originally published in the July/August 2025 aakpRENALIFE magazine.
