Leo Fought Like a Lion to Beat Stage 5 Kidney Cancer

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Leo is the happiest, most rambunctious, most lovable 3-year-old you could meet. He handles boo-boos and other toddler woes with a smile. But in summer 2022, the discovery of blood in Leo’s pull-up diaper caused his parents, Andrea and Daniel, to suddenly worry about their worry-free child.

Cancer detected

Andrea and Daniel brought Leo to Lehigh Valley Reilly Children’s Hospital in Allentown, Pa., which is near where they live. He underwent an ultrasound – a standard procedure with urinary-related issues. That led to an unexpected discovery: There were tumors on Leo’s kidneys. At just 2 years old, Leo had a hard fight ahead of him.

On Aug. 11, 2022, Leo was admitted to the Children’s Cancer and Multipurpose Infusion Center at Lehigh Valley Reilly Children’s Hospital. Further scans by the pediatric oncology team there revealed that it wasn’t just Leo’s kidneys that were compromised. He also had tumors in his lungs and going up his veins.

Leo was diagnosed with stage 5 bilateral Wilms tumor, a malignant tumor originating in the cells of the kidney, with metastasis to his lungs. Because of Leo’s advanced Wilms tumor, he began treatment right away under the care of Jacob Troutman, DO, a pediatric hematology oncologist with Lehigh Valley Reilly Children’s Hospital.

“Our world got flipped upside down,” says Andrea. “But Dr. Troutman told us that he was really confident in treating Leo’s cancer and curing it. We felt hopeful and confident in our care team at Lehigh Valley Reilly Children’s Hospital.”

Chemo round one (and two)

There wasn’t much time for Leo and his family to process his life-changing diagnosis before his treatment began.

Leo’s treatment began with six weeks of chemotherapy to shrink the tumors enough that they could be surgically removed. Unfortunately, it took two six-week rounds of chemo for Leo to get the OK to move forward with surgery.

Dr. Troutman and his team were facing a unique situation. While Leo’s right kidney needed to be removed, part of his left kidney could be saved. Performing this intricate procedure (known as kidney-sparing surgery) required specialized expertise. Dr. Troutman has access to this special expertise thanks to the relationship between Lehigh Valley Health Network (LVHN) and Children’s Hospital of Philadelphia (CHOP).

Dr. Troutman and his team consulted with Thomas F. Kolon, MD, pediatric urologist and Chief of the Division of Urology at CHOP. Dr. Kolon is an expert in the care of children with genital disorders and renal/bladder/prostate cancers. His expertise in pediatric urologic oncology includes optimizing organ-sparing surgery.

The partnership between LVHN and CHOP makes sharing patients easy. For Leo and his family, this made their lives a little easier during such a difficult time. It meant the family only had to travel to Philadelphia for Leo’s surgery. They could stay close to home for everything else, including all his scans and checkups.

“Dr. Kolon and his team were very receptive,” says Dr. Troutman. “We continuously communicated about what was best for Leo and were able to effortlessly send scans and other important information between both of our teams.”

Surgery strategy

Dr. Kolon and Dr. Troutman worked together to devise the best plan for Leo. Dr. Kolon worked with CHOP’s pediatric radiologist, Susan Back, MD, and colleagues in CHOP Radiology to formulate 3D models of Leo’s kidneys. The models would aid in deciding on and performing nephron-sparing surgery.

“Because of how intricately the multiple tumors involved critical structure of his right kidney, Leo needed a nephrectomy — a complete removal of the kidney,” says Dr. Troutman. “Dr. Kolon and I agreed that the best plan for Leo was for him to have Dr. Kolon remove his right kidney first. We would then give his body time to adjust to the changes. Leo would do a round of chemo at the Lehigh Valley Reilly Children’s Hospital Children’s Cancer and Multipurpose Infusion Center, and then he would return to CHOP in six weeks for Dr. Kolon to perform the kidney-sparing surgery on his left kidney.”

After the successful removal of his right kidney and just shy of six weeks of chemo, Leo was getting geared up for surgery No. 2. But then, a week before the second surgery date, Leo got the flu.

Because you can’t go under anesthesia if you have a respiratory infection, such as the flu, the surgery team at CHOP postponed Leo’s surgery in hopes of scheduling a new surgery date in four to six weeks. In the meantime, Leo would receive chemo. Ahead of the next surgery, Leo would need to have new scans done to make sure there were no big changes.

A month later, Dr. Troutman’s team performed Leo’s ultrasound as a precursor to the second surgery and then sent the scans to Dr. Kolon for review.

“The scans revealed significant improvement in the tumor on Leo’s left kidney,” says Dr. Kolon. “There was a very tiny area on his left kidney that I wanted to keep an eye on, but I was fairly certain it was scar tissue (nephrogenic rest – a cancer precursor) from the chemotherapy, not an active tumor. Because of how well the chemo worked, surgery was no longer required.”

The surgery was canceled. The new plan was for Leo to have a follow-up MRI in one month. During that time, he would continue receiving chemotherapy and begin radiation.

Next up: Radiation therapy

Leo began his radiation treatment on Feb. 28, 2023, making him the first kid ever to get radiation from the cancer center at LVHN. Under the care of Dennis Sopka, MD, radiation oncologist and Chief of the Division of Radiation Oncology at LVHN, Leo received radiation to both his lungs and flanks.

During Leo’s nine days of radiation, “the staff was absolutely phenomenal,” say his parents. “Radiation was rough for Leo, but the team made such a difference during such a difficult time for Leo and our family.”

On March 9, Leo received his last radiation treatment and got to ring the finality bell, which is rung three times on the last day of cancer treatment — once for love, once for hope and once for courage. LVHN’s radiation oncology team took the celebration even further, throwing Leo a big party with streamers and balloons. The team also got him tickets to see the Thomas the Tank Engine train, gift cards, and toys for him and his older brother.

“The LVHN radiation oncology team has been truly amazing,” says Daniel. “This generous and kind group of individuals truly went above and beyond to make Leo’s treatment and last radiation day truly spectacular. We can’t thank them enough for everything they did for Leo and our family.”

A genetic answer to, ‘Why?’

While Leo received treatment, the genetic team at CHOP searched for answers. After testing the tumor on Leo’s right kidney, they found that Leo has Beckwith-Wiedemann syndrome (BWS), a congenital growth disorder commonly characterized by overgrowth. Leo had two subtle symptoms of BWS that went undetected until now: one of his legs is a little longer than the other and he has little folds on his ears.

“From overgrowth of one side of the body to enlarged organs, Beckwith-Wiedemann syndrome affects every child differently. However, all children with BWS are at an increased risk for childhood cancer, with Wilms tumor being among the most common,” says Dr. Troutman. “Now that we know Leo has BWS, we can be proactive, keeping an eye out for any concerns and, if so, addressing them quickly.”

Moving forward, Leo will get scans at Lehigh Valley Reilly Children’s Hospital every three months. He will be closely monitored until he is 7 years old.

Warrior named Leo

On May 23, 2023, Leo had his last dose of chemotherapy, marking the completion of 25 weeks of chemotherapy. His port was removed on July 26, 2023.

“Lehigh Valley Reilly Children’s Hospital and the children’s oncology team have been so amazing,” says Andrea. “We are so glad to have them behind us on this fight and guide us through the hardest moment of our lives.”

Leo is currently in remission and will continue having follow-up scans to make sure the cancer doesn’t return for years.

“Leo isn’t your typical kid — he’s a warrior,” says Dr. Troutman. “What Leo went through was a lot for a little kid, but when you looked at him, you would never know. He was always smiling and always happy. I’m not sure I ever saw him cry. Like I said: a warrior.”

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