We were at our favorite skate park with friends when my son, Rocco, fell off his skateboard and hurt his leg. We headed straight to the ER, where we found out that Rocco had a closed triplane fracture of his right ankle. While in the ER, they also noticed his blood pressure was high. My first thought was, ‘He just broke his ankle, of course it’s high.’ But the nurse insisted that we make a follow-up appointment with his pediatrician.
After a few days of Rocco being home, we checked his blood pressure, and it was still very high. So, we made an appointment with the pediatrician. Rocco’s father was 13 years old when he went into kidney failure. Because of this family history, I asked them to do a full kidney workup on Rocco. A day later, we received a phone call asking us to go to our local pediatric emergency room for more lab work.
Once all the labs came back, an ER doctor came into our room and asked, ‘Which hospital would you like to go to?’ It was every parent’s worst nightmare. Since Nemours Children’s Hospital, Delaware, was treating Rocco for his fractured leg, we decided Nemours Children’s was our next destination.
Rocco was transported to Nemours and admitted to the PICU, where they confirmed that Rocco had end-stage renal disease. While in the PICU, you are asked so many questions and meet so many new faces. One of the things that came up was that Rocco’s father also had end-stage renal disease at roughly the same age. The crazy part was that the doctor who did Rocco’s father’s transplant was Dr. Stephen Dunn. The same doctor who is now at Nemours and would be doing Rocco’s surgery.
Things happened quickly after that. Rocco had a dialysis catheter put in, and he would move to having outpatient dialysis three times a week. The dialysis nurses were amazing and so supportive during our time there. We were very lucky to find a living donor for Rocco, a good friend that I worked with offered to give Rocco her kidney. After lots of appointments, matching, and screening, we received a call that our surgery would be scheduled for April 26, 2022.
Looking back, I can now recognize so many red flags. But at the time, we had no idea that Rocco would be diagnosed with end-stage kidney failure. Before his diagnosis, he was just a typical 15-year-old, enjoying life to the fullest—hunting, skateboarding, spending days at the beach, and hanging out with friends. His condition came as a shock, as he was so active and engaged in everything he loved.
Our experience with the Nemours doctors, nurses, and clinicians was exceptional. Rocco’s dialysis team was incredibly supportive, and his nurses, Kyla Clark-Freeman and Tessa DeStafano, were especially great with him. They shared many conversations filled with Rocco’s random, useless facts, which always made treatments more enjoyable.
Spending three days a week in dialysis for about four hours each session was challenging, but the child life team made it much more bearable. They kept Rocco engaged with games like Uno and planned fun activities. One of the most memorable moments was when they reached out to Sony, which generously released a copy of the new Spider-Man movie for the kids on dialysis to watch. They even brought in a big cinema TV, making it a special experience for everyone.
Rocco was fortunate to only need dialysis for about six months, while many others endure it much longer. We are incredibly grateful for the care, compassion, and support provided by the entire Nemours team.
Rocco’s recovery is progressing very well. He remains under the close supervision of his care team, including Dr. Dunn, Dr. Gluck, Dr. Onder, Nicole Tumolo, APRN, and Cathy Ramage, APRN, among others. He has check-ups every three months and monthly lab work to monitor his health. We are fortunate to have a fantastic support system in place to ensure he stays on track. April 26th marks Rocco’s three-year transplant anniversary—a significant milestone in his journey. We are incredibly grateful for how far he has come!
Rocco has an incredibly bright future ahead of him. He will be graduating from both high school and the Fire Academy at the end of June. Inspired by the incredible nurses he has met along the way, he once considered a career as a pediatric dialysis nurse but has ultimately decided to pursue the EMT/Firefighter path.
Today, Rocco is committed to managing his health responsibly. He understands the importance of taking his immunosuppressants and other medications daily, as well as staying well-hydrated. While he occasionally struggles to meet his hydration goals, he remains aware of its critical role in his overall well-being and continues to work toward maintaining a healthy routine.
Seeing your child on dialysis is incredibly difficult. There are so many ups and downs, and the wait for a transplant can feel endless. But once the transplant happens and they begin their recovery, it’s truly amazing to watch them thrive.
One piece of advice that has stuck with me came from Cathy—she told me that hospitalizations after a transplant are normal and not to see them as setbacks. Rocco has been admitted for various reasons, like the flu or other viruses. But most often, it’s just to keep him hydrated and ensure his kidneys stay healthy while his body fights off an infection. Nearly three years post-transplant, we still keep an emergency hospital bag packed with essentials—playing cards, Uno, chargers, and toiletries—just in case. But when I look at Rocco today, I see how far he has come, and that makes every challenge along the way worth it.
