By Kate Marino

Abby and Cesi have a lot on their plates above and beyond the pressures of school and childhood – things most of their peers will never experience.

While some kids connect over sports, songs or other similar interests, these girls were brought together by their kidneys.

Children’s Hospital of Richmond at VCU has been like a second home for 10-year-old Abby and 13-year-old Cesi.

The nephrology team at CHoR met Cesi in the summer of 2020. She began dialysis in February 2023 and was fortunate to receive a kidney transplant a few weeks later.

Abby first came to CHoR in February 2022 from her family’s hometown ER about an hour away. She was diagnosed with Wegener's granulomatosis, a rare autoimmune disease that attacked her sinuses, lungs, and kidneys and led to end stage renal failure. She began dialysis immediately and received her kidney transplant that October.

Their care has included hospital admissions, dialysis, and clinic appointments up to three times per week, and monitoring care at home. They also take many medications throughout the day, which also leaves them immunocompromised.

Compared to most kids their age, Cesi and Abby, now 13 and 10 respectively, have spent a significant amount of their young lives in the hospital. That’s why their CHoR care team connected them.

“Both girls were very shy initially but were happy to connect with someone their age who has been through kidney transplant,” said Heather Lambert, clinical social worker for the nephrology team.

Recovering together from kidney transplants

Abby and Cesi met on a video call for the first time, shyly sharing their favorite activities and passions.

Abby loves playing with her little sisters, comics, and video games. A special gift she received shortly after her diagnosis was a tablet, it helped her get through her medical journey while staying connected to friends and family.

Cesi enjoys spending time with her family, getting her nails done, and swimming. She’s excited to become both a big sister and an aunt soon.

Our hope is that their connection with someone else who is dealing with transplant will help normalize their treatment, ultimately leading to motivation to keep up with it.

Heather Lambert, clinical social worker at CHoR

Despite their different interests and primary languages – Abby’s is English, Cesi’s is Spanish – the girls have bonded in such a special way.

“It was an awesome experience for Abby to chat with somebody who knew exactly what she was going through. Since then, they’ve kept in touch via messenger and often play Roblox together,” said Abby’s mom, Samantha.

Their relationship will also continue to be helpful as they get older. Staying consistent with medications and doctor’s appointments can be a struggle for young transplant recipients. Not managing medications increases the risk that a patient’s body will reject a transplanted organ, which Lambert says leads them back to dialysis and needing another transplant sooner than they would otherwise.

"While this isn’t currently an issue for these girls, it could be an issue we see as they get older,” Lambert explained. “Our hope is that their connection with someone else who is dealing with transplant will help normalize their treatment, ultimately leading to motivation to keep up with it.”

Looking toward the future with optimism

Abby and Cesi are doing great and have excellent prognoses, but ultimately will need another kidney transplant in the future.

Deceased donor kidneys typically last 8 to12 years. While they got their first transplants relatively quickly, the next may take longer. Children often receive deceased donor kidneys more quickly than adults. Ideally, the girls will be able to find someone in their community who’s able to be a living donor, reducing their time on dialysis or even avoiding dialysis altogether. Living donor kidneys tend to last longer than deceased donor organs too.

In the meantime, the girls have returned to their pre-dialysis lifestyles. They both attend school in person, though they miss more days than their peers because their lowered immunity makes them more susceptible to getting sick. They’re seen in the clinic less frequently than they once were, but they’re grateful for the CHoR team that continues to be alongside them each step of the way.

“The care received at CHoR has been the best hospital and doctor experiences we’ve ever had. From Dr. Bunchman’s brilliant team to the always smiling workers at the front desk, and the many various health care workers we’ve met at the hospital and clinic – your dedication to your patients is unmatched and truly inspirational,” Samantha said. “Abby also had many inpatient stays at CHoR and though going to the hospital can be scary for both children and parents, we always felt comfort knowing that her team was there waiting for us ready to give Abby the best care they could.”

CHoR’s Child Life programming has also been important for the girls, offering comfort items, arranging arts and crafts days both in the hospital and at dialysis, providing pet therapy and more. They make sure Abby, Cesi and all patients understand what’s happening and that they’re as comfortable as possible through it all.

Perhaps the most integral members of the team, though, are the families.

“Despite the challenges, both families diligently come to clinic while balancing the demands of work, caring for siblings and maintaining a household,” Lambert said. "Our team has been touched by how dedicated both families are to caring for their daughters. These families have had to sacrifice a great deal to ensure their daughters receive their needed medical care.”