30 DAYS/30 STORIES® 2023
On August 11, 2022, Leo was unexpectedly diagnosed with Stage V Wilms tumor – kidney cancer. Leo was enjoying his summer being a wild 2 year-old. What alarmed us was he started having some blood in his pull-up. We called his doctor, and they sent him to get an ultrasound of his kidneys. We were told that he had tumors on both of his kidneys and that they unfortunately were most likely malignant. Things moved quickly from there. We were admitted to the hospital and testing was completed. He had a CT scan of his abdomen, pelvis, and chest. They found he had large tumors on both of his kidneys, many tumors in both of his lungs, and the tumor was going up into the vein. As parents, we were devastated. Our little boy went from having a completely normal life to being told he has cancer. Our entire world was flipped upside down. We relied so much on our family, friends, coworkers, community and most of all our healthcare team to get us through this.
While in the hospital, Leo had his port placed and he started chemotherapy. He spent a week in the hospital when he was diagnosed and was also started on blood pressure medications.
Leo endured 25 weeks of chemotherapy. He went weekly to clinic from August 2022 to May 2023 at Lehigh Valley Reilly Children’s Hospital. He had a total right nephrectomy (his right kidney was removed) in December 2022 at Children’s Hospital of Philadelphia. In this surgery, they found that the cancer was also in his lymph nodes around his kidney as well.
After removing his right kidney, the surgeon at CHOP wanted to give Leo’s body time to recover and adjust to having only one kidney. They were planning to take him back in February to remove part of his left kidney. By the time this surgery came around, the tumor had shrunk so much that they held the surgery. They believed the chemo was doing its job without needing surgery. He also endured nine rounds of radiation to his lungs and right flank in March 2023 which required him to get anesthesia daily. Leo also has high blood pressure from all of this, so he takes medication daily.
After his kidney was removed, the genetic specialists at CHOP tested for many genetic mutations. Leo was officially diagnosed with Beckwith-Wiedemann Syndrome. This effects kidneys, liver, and other organs. He will also need to follow up with an orthopedic doctor because one leg is slightly longer than the other.
During all of this, there were times of ER visits, fevers, skin tears, port accesses, medication changes, chemo holds, lab draws, MRIs, CT scans, ultrasounds, x-rays, and many tears. We had each other, and Leo’s strength got us all through it. His big brother Keegan has been there by his side this entire time feeling everything along side with him. He is his best friend, and we think he would trade places with him in a heartbeat. He would help Leo take his medicine, go to chemo with him and hold his hand during port accesses, tell him it will “be okay”, ask when Leo won’t be sick anymore, and always wants to be with him.
On May 23, 2023, he officially completed his last dose of chemotherapy. He then had his end of treatment scans which were clear. July 26, 2023 ,he had his port removed. Our little lion “rang the bell” on August 11, 2023 (exactly one year later).
Leo will continue to have scans every three months until he is 7 years old to make sure his cancer does not come back and his organs are normal size. He has an army behind him, and we get our strength from him. He is the strongest little boy we know.
Written by Leo’s mom and dad, Andrea and Daniel
Please consider helping children with cancer and others in our community by scheduling a blood donation at Miller-Keystone Blood Center: https://donor.giveapint.org/donor/schedules/zip