Finding his way

Individualized treatment for aggressive pediatric cancer helps Cedar Rapids boy live a normal life

Two-year-olds aren’t always the steadiest of walkers, but when Ulyssa Weber noticed her son, Leighton, was starting to limp, she knew something wasn’t right.

Leighton also had a recurrent fever, but several trips to their Cedar Rapids doctor for possible influenza—including lab visits and X-rays—turned up nothing.

“We were so frustrated and worried but started to feel like we were going crazy or something because we kept getting sent home,” Ulyssa says.

Finally, in January 2015 Leighton and his parents, Ulyssa and Jordan, were referred to University of Iowa Stead Family Children’s Hospital, where a team of doctors worked to determine what could be making Leighton so sick. Magnetic resonance imaging (MRI) scans provided the information that would change the Webers’ lives.

“Several doctors walked into the room to tell us the news, and I instantly knew something was very wrong,” Ulyssa says.

Leighton was diagnosed with high risk stage IV neuroblastoma—a very rare form of pediatric cancer found in the adrenal glands. It typically affects children under the age of 5. Aggressive neuroblastoma can develop in the bones, spine, and bone marrow.

High risk stage IV neuroblastoma comes with an equally aggressive treatment: chemotherapy, surgery, high-dose chemotherapy treatment with a bone marrow transplant, retinoid therapy to help some cancer cells mature into normal cells, immunotherapy, and radiation.

Having a multidisciplinary pediatric cancer team in place made a difficult situation a bit easier. Patients like Leighton are typically able to see specialists in one day at one location. In a state like Iowa, many patients travel for hours at a time to get to Iowa City, so having all of the appointments in one day is a major convenience for families.

Even with a full treatment regimen, the “cure rate” is only about 50 percent, according to Mariko Sato, MD, PhD, a pediatric neuro-oncologist at UI Stead Family Children’s Hospital who oversees Leighton’s treatment.

Leighton’s response to the first line of chemotherapy wasn’t ideal, so doctors searched for a second line, Sato says.

“We did a second round of chemotherapy, and his body tolerated that much better,” she says.

Watching her son go through the treatments—and watching his older brother, Jarron, worry—was difficult, Ulyssa says.

“I don’t think people understand the impact cancer has on the other children in the family. Jarron worried a lot about his brother, and it killed me as a mother to see him upset when his brother was very sick,” she says. “He asked me a couple of times if his brother was going to die, and in the beginning of our journey we had no idea what the outcome would be.

“I remember the first couple months when he first started treatment, I didn’t want to worry the boys,” Ulyssa adds, “so anytime I was in the car or driving alone I would silently cry, and sometimes sob uncontrollably.”

The individualized treatment has worked to this point—after 22 months, Leighton, now 4, is in remission. That doesn’t mean he’s out of the woods just yet, however.

“Because this is such an aggressive cancer, these tumors can come back,” Sato says. Typically, if a child can go two years without a recurrence, “they’ll probably be OK,” she says.

Ulyssa knows Leighton’s journey isn’t over, and she says their family has adjusted to their new “normal.”

“You don’t know what the future brings,” she says. “With neuroblastoma, the recurrence rate is still about 50 percent, so we are prepared that we might have to go through it all again, and just fly by the seat of our pants.”

Leighton is now in preschool four days a week and doing things most other 4-year-olds do. He and Jarron, 8, play together, wrestle, and, like many brothers, fight. Occasionally, Leighton and his family return to the hospital for check-ups and to monitor his remission.

Overall, Ulyssa says, the family is in a good place.

“What I want people to understand the most from Leighton’s story is that he is good, we are good,” she says. “Just because we have gone through so much doesn’t change that. It could always be worse, and thankfully, we still have the possibility of being able to raise our son for years to come. We feel incredibly lucky to have our little boy throwing tantrums and picking on his older brother.”