Everlee’s story begins with a diagnosis of hepatoblastoma, a rare form of liver cancer, at the age of 17 months.
Her mother, Jenna, recalls the moment when she first noticed something amiss with her daughter’s health. “It was right around Christmas of 2022,” says Jenna. As first-time parents, Jenna and Jarod couldn’t shake the feeling that Everlee’s belly seemed larger than normal. Despite reassurances from pediatricians, inklings of concern persisted, especially when family members echoed their observations.
“Something just seemed off,” says Jenna. “I was giving her a bath one day, and I laid her out on the towel and thought, ‘Oh my gosh, she just looks so bloated.'” Alarmed, Jenna wasted no time in seeking medical attention.
She was able to get Everlee in to see her local pediatrician at their last appointment for the day on Friday, January 13th. The routine examination led to the discovery of a concerning mass in Everlee’s abdomen. Jenna vividly recalls the shock of seeing the scans, prompting urgent action from the medical team. Everlee’s pediatrician called the ER at their local children’s hospital to let them know they would be arriving soon. “I just kind of shut down,” says Jenna, “I was not expecting anything like that at all.”
Jenna and Jarod navigated the initial whirlwind of emotions and logistics. They braced themselves for an uncertain journey ahead. “I didn’t know how to respond to it,” says Jenna, describing the blur of hospital admissions and diagnostic tests that followed.
For two weeks, Everlee and her family endured an agonizing wait for answers. Eventually, the doctors came to the conclusion that Everlee had a rare form of liver cancer. “I was scared to death, obviously, because it’s your child and you don’t think this will happen to you,” says Jenna.
Upon receiving Everlee’s diagnosis, the medical team informed her family about the available treatment options. Typically, chemotherapy is administered to reduce the tumor size, in hopes that the tumor can be cut out, leaving the rest of her good liver. The other option would be a liver transplant. However, due to the absence of a specialized liver surgeon at their local children’s hospital, their oncology team recommended consulting with Dr. Dunn at Nemours Children’s Hospital, Delaware. Known for his expertise in pediatric liver transplantation, Dr. Dunn came highly recommended as the go-to expert for cases like Everlee’s. “Everyone told us ‘He’s the best of the best, and if you want an expert to see your child, that’s who you want,’” says Jenna. “So, of course we wanted to see Dr. Dunn.”
In a display of dedication, Dr. Dunn reached out to Jenna and her family over the phone, despite not yet being their attending physician. “I was awestruck, I guess,” says Jenna. “This big-time surgeon is taking time out of his day to give us a call about our daughter, and we weren’t even his patient yet. It was amazing.” Before their initial meeting at Nemours Children’s, Jenna and Jarod had the opportunity to speak with Dr. Dunn multiple times, further solidifying their confidence in his expertise and compassionate approach to patient care.
Before Everlee’s liver surgery, she underwent additional procedures at Nemours Children’s, including visits with Dr. Aguado and Dr. Paidas. As her hepatoblastoma metastasized to her lungs, Everlee underwent surgery to remove nodules with Dr. Paidas, followed by radiation therapy administered by Dr. Aguado. These preliminary treatments were crucial steps in preparing Everlee for the liver transplant, as the medical team worked to eradicate the cancer from her body.
Dana Mannino, an APRN, serves as the transplant team contact for Jenna and Jarod. “She has become my lifeline and a friend,” says Jenna. “I text her or call her with any and all questions I have and we pretty much chat at least weekly. We cry together, laugh together, hug and she is so important to our family post-transplant and will be for years to come.”
The day of Everlee’s liver transplant, August 10, was a nerve-wracking experience for her family. The extensive procedure marked the 200th liver transplant at Nemours Children’s Hospital, Delaware. Lasting 10 to 12 hours, Jenna and Jarod spent the night full of emotions from fear to hope. As they anxiously awaited news of Everlee’s condition, they found solace in the continuous updates provided by the medical staff at Nemours. While they waited through those grueling overnight hours, they asked to meet with the Chaplin and their social worker to help them talk through their feelings, as well as pray with them. This support was so important to them during that wait time.
Throughout the lengthy procedure, Jenna and Jarod remained in the waiting room, surrounded by a supportive team dedicated to keeping them informed. “We were super impressed with the fact that we were getting updates constantly,” says Jenna. “People would come out to check with us. Tell us everything was good and let us know where they were in the process. It was very comforting. We weren’t having to be like, ‘Oh my God, we haven’t heard from anyone in a while.’ They were on top of it with letting us know. We feel like every parent should have that. You shouldn’t have to ask.”
After about three weeks in the hospital post-surgery, Everlee was finally able to go home. Collaboration continues between Nemours and Everlee’s local oncology team. “She’s still doing chemo because she technically still has cancer,” says Jenna. “She isn’t in remission yet, so we’re still working with our oncology team back home. But they are in close contact with the Nemours team, so that gives us lots of comfort, too. It’s really nice to have the Nemours transplant team and our home oncology team work together, even though they are from different hospitals and are states apart. They always know what’s going on with her.”
“There have been numerous individuals involved in her care,” share Jenna and Jarod. “Her team, comprising 18 people, has been instrumental in her recovery. While it’s hard to acknowledge everyone individually, the entire team has played a crucial role in her well-being. Notably, the surgical team, which included Dr. Dunn, Dr. Shah, Dr. Bodzin, and Dr. Paidas, conducted her procedures. Additionally, her care team consists of hepatologists such as Dr. Adeyemi and Dr. Cohen, pediatricians including Dr. Consolini, Dr. Cellucci, Dr. Soprano, Dr. Bleznak, and Dr. Fackelman, as well as APNs like Dana Mannino, Nicole Tumolo, and Louise Flynn. Other essential members include Emily Jackson in social work, pharmacist Courtney Kain, dietitian Meghan Bohney, and psychologist Dr. Noeder. Everlee will be in the care of this team until she is an adult, so they are like a second family to us.”
Reflecting on their experience with Nemours, Jenna says, “We couldn’t ask for better doctors and nurses and everyone else that is involved. We feel like at times you’re the only patient being taken care of by them. I certainly would recommend Nemours, even with all the travel, it’s worth it to us. I would drive there every day if I had to if it meant that we got the best care for our daughter. We can’t thank Nemours enough, especially Dr. Dunn. He’s such a ray of light. We don’t know what we would do without him. He’s such an expert in all of this and he’s just such a nice, nice person. He really cares and he’s very passionate about what he does. We’re just hoping for the best outcome and that we can look back 20 years from now and have Everlee doing some amazing things thanks to all the people involved that helped us along the way.”
