Surviving Stage 5

Jayden and Javon Lee_Surviving Stage 5Jayden Lee and his brother, Javon, are active and inseparable identical twins. So when 3-year-old Jayden clung to his mother, Tiara, during a shopping trip instead of running ahead to play with his brother, Tiara knew something was wrong. 

“He complained that his tummy hurt. His teacher at preschool told me he wasn’t himself at school – that he was tired that day,” Tiara says.

Back home, a temperature check confirmed the Hampton boy also had a fever. Tiara knew the symptoms of appendicitis because she had it as a child. Concerned that Jayden might have appendicitis, Tiara and husband Jay took their son to Riverside Regional Medical Center’s emergency room. After examining the boy, doctors there called CHKD’s transport team to take Jayden to CHKD.

A few hours later, the Lees were stunned to hear the cause of their son’s discomfort: Jayden had tumors on both of his kidneys. One of them was the size of a grapefruit.

“That moment in October of 2013 changed everything,” Tiara says. Tests at CHKD revealed what appeared to be Stage 5 Wilms’ tumor, a kidney cancer that primarily occurs in children. Approximately 500 cases are diagnosed in children annually in the United States. Of those, only 5 to 10 percent involve tumors on both kidneys.

In most cases of Wilms’ tumor, surgeons remove the entire kidney along with a wide margin of surrounding tissue to reduce the likelihood of recurrence. Patients can live with one kidney. When tumors grow on both kidneys, treatment becomes much more complicated.

Dr. William Owen, a pediatric oncologist at CHKD, explained this to the Lees. “With Jayden, we had two goals,” he said. “Treating the cancer and saving as much of Jayden’s healthy kidney tissue and function as possible.”

Like most cancer patients at CHKD, Jayden was treated on a research protocol reflecting the latest, outcome-based guidance gathered from hundreds of pediatric cancer centers like CHKD that collaborate under the umbrella of the Children’s Oncology Group – an organization supported by the National Institutes of Health.

“CHKD plays an important role in the Children’s Oncology Group,” says Dr. Owen. “We have enrolled more patients in the last five years and have a larger number of clinical trials open for enrollment than any other pediatric program in the state. Our physicians lead the committees that establish treatments used on patients all over the world. At CHKD, we aren’t just following someone else’s framework for treatment; we’re involved in the development of these groundbreaking therapies.”

Jayden Lee_Surviving Stage 5Jayden’s treatment began immediately with an aggressive chemotherapy regimen to shrink the tumors. Six weeks later, in mid-December, CHKD surgeon Robert Obermeyer, removed the tumor on Jayden’s right kidney, leaving most of the organ intact. Then Jayden went through another course of chemotherapy in preparation for the most challenging aspect of his treatment: removing the grapefruit-sized mass from his left kidney without removing the entire organ.

“Even after two rounds of chemo, the tumor was huge – larger than any other organ in Jayden’s body,” says Dr. Obermeyer. “It was pressing on his aorta and his diaphragm. And we knew the surgery would affect drainage from the kidney into the bladder.”

To prepare for the complex procedure, Dr. Obermeyer created a detailed, written plan for the operation and reviewed it step-by-step with the entire surgical team, which included fellow pediatric surgeon Michael Goretsky and pediatric urologist Louis Wojcik.

The surgery took eight hours. When Dr. Obermeyer met with the Lees afterwards, he was able to share good news. The surgical team removed the entire tumor and managed to save 30 percent of Jayden’s left kidney. Dr. Wojcik reconstructed the path of kidney drainage to the bladder.

“A healthy kidney has about a million tiny structures called nephrons, which filter waste and produce urine. In cases like this, every nephron is important,” says Dr. Obermeyer. “Though the remaining kidney is small, Jayden is going to grow – and his kidney will have an opportunity to grow too.”

Jayden spent the following month in the hospital as his kidney slowly healed. “That was an especially tough time,” Tiara says. “It seemed like he was in the hospital forever.”

During that time, Tiara specifically recalls the importance of the support CHKD provided to the entire Lee family. Child life specialists kept Jayden entertained during treatments, helped Javon during visits with his brother and regularly lifted Tiara’s lagging spirits. “I cried on the shoulder of Bryan Sellitti, a child life specialist in the cancer clinic, plenty of days,” she admits.

Despite the seriousness of his condition, Jayden never lost his smile. When he was finally able to get up and walk, he gave it his all. “He took off running down that hall with the tube hanging out of his back,” Tiara remembers. “Jayden is a strong kid. He is my warrior child.”

Today, Jayden is a happy, healthy pre-kindergartner who is back to making mischief alongside his brother. “Jayden is doing great. He will continue with follow-up tests every three months for several years,” Dr. Owen says. “His prognosis is excellent.”

Most of all, the Lees are grateful to CHKD for doing everything possible to save Jayden’s kidneys and ultimately his life. Dr. Obermeyer is also very pleased with Jayden’s outcome. “When you care for children, it makes you want to fight for them more because they have so much life ahead of them,” says Dr. Obermeyer. “You want to make sure you do everything you can.”