For most teenagers, the summer before their senior year of high school is a time to hang out with friends, work a part-time job, and start thinking about college applications. But Cody Bass spent that summer recovering from a major operation at Memorial Sloan Kettering Cancer Center (MSK) to treat metastatic kidney cancer.
He was also dreading the next step: starting chemotherapy. “I like my hair, and I didn’t want to lose it,” Cody says. “I didn’t want to go through my senior year bald.”
But just days before chemotherapy was scheduled to begin, Cody and his mom, Nicole, learned from his doctor, pediatric hematologist-oncologist Michael Ortiz, MD, that he had qualified to participate in a clinical trial for a drug called alectinib (Alecensa®) that wouldn’t cause his hair to fall out.
“I was jumping for joy when they told me I didn’t have to do chemo,” Cody remembers.
Two years after starting alectinib — he still takes the pills twice a day — Cody has no evidence of disease. The drug causes some side effects, but Cody graduated from Tottenville High School on Staten Island in 2023 and is now a 19-year-old sophomore at John Jay College of Criminal Justice. Especially important, he has been able to keep up his passion for bowling.
Molecular Testing Matches Patients With Targeted Therapies
Cody was prescribed alectinib, a targeted therapy, after a molecular test called MSK-IMPACT® found that his cancer carried a mutation called an ALK fusion. Kidney cancers caused by ALK fusions are extremely rare, particularly in children where only a handful of cases have ever been reported. So there was no standardized treatment approach.
“MSK has some of the world’s experts in ALK inhibitors, so we were able to leverage that internal expertise to identify this trial as a promising treatment for Cody,” Dr. Ortiz says.
Cody, then 17, was the first pediatric patient to take alectinib in the United States, which was originally developed to treat adults with lung cancers carrying ALK fusions. It is now being studied in other cancers with this genetic change.
Cody’s success is the result of a team approach at MSK, bringing together experts in pediatric and adult cancers. Dr. Ortiz, together with pediatric hematologist-oncologist Julia Glade Bender, MD, leads the Rare Tumors Program within MSK Kids, the pediatric arm of MSK.
“The most common solid tumors in children that we see are brain tumors, neuroblastoma, and sarcoma,” Dr. Ortiz says. “The Rare Tumors Program covers everything else — including cancers that usually appear only in adults.” These include germ cell tumors, melanoma, colon cancer, liver cancer, and kidney cancers such as renal cell carcinoma, the type of cancer that Cody had.
“When you only see rare tumors, what’s rare becomes a little more common,” Dr. Ortiz says. “By establishing this program, we have been able to focus the expertise that already existed within MSK Kids. And we are able to bring in additional specialists to ensure we are providing the best care for children and adolescents with these very rare cancers.”
Cody’s Diagnosis With Metastatic Renal Cell Carcinoma
Cody’s journey went from terrifying to triumphant.
After signs of anemia and a urinary tract infection (both uncommon for a teenage boy), he had a sonogram at a local hospital that revealed a tumor about the size of a cantaloupe on his right kidney. Follow-up scans found something that would strike fear in any parent: The cancer was metastatic and had spread to both lungs.
Nicole, Cody’s mom, decided not to tell him right away. “I knew he would have questions, and I didn’t have any answers for him. I figured I would let him hear it from the doctor, and then the doctor could answer his questions.
She also knew immediately that she wanted that doctor to be at MSK. “It’s a great hospital, but it’s still not the place you want your child to ever have to be,” she says. “From the beginning, everyone we met there was absolutely amazing.” They had their first appointment on June 16, 2022, and Cody’s surgery took place just 11 days later.
MSK Kids pediatric surgeon Michael La Quaglia, MD, FACS, FRCS, performed the operation, which lasted about 10 hours. In addition to removing Cody’s right kidney and adrenal gland, lymph nodes in his pelvis, and spots on both lungs, he also removed Cody’s appendix, which was severely inflamed — something unrelated to his cancer.
Sent Home Sooner Than Expected, Thanks to Support From MSK’s Nurses and Physical Therapists
Cody recovered from the operation quickly. To prevent fluid from building up while his body adjusted to having only one kidney, the nurses and physical therapists told him he needed to walk laps around the floor.
“I was out there walking with my cart, and all the nurses were helping me. They were amazing,” he says. “By the last day, I did like 40 laps.” He was able to go home several days earlier than expected.
Once he had recovered fully, he was anxious to get back to bowling. One of the stars of his high school’s team, he didn’t want to miss the chance to compete his senior year. His coach was able to rearrange the competitions to accommodate Cody’s frequent appointments at MSK.
Just five months after his cancer surgery, Cody had a series of scans and a major bowling competition on the same day. Having spent much of the day at MSK, he was exhausted as he competed in the PSAL City Bowling Championship, hosted by the New York City Public School Athletic League. He wasn’t bowling his best. But halfway through the tournament, his mother whispered to him that the results were in: His scans were clear.
“The next thing I know, he wins the whole thing!” she says.
Paving the Way for Future Patients With Kidney Cancer
Cody now goes to MSK once a month and receives scans every three months. The drug’s side effects are minimal: Mostly, it has made his skin more sensitive and changed the way that certain foods taste.
He takes it all in stride. He has bonded with Dr. Ortiz over the two years he has been seeing him. Nicole describes Cody’s relationship with Dr. Ortiz as a “bromance.”
“When I first met Dr. Ortiz, he was very straight-faced,” Cody says. “But that’s not who I am. I find humor in dark situations. I broke him down, and now he jokes around with me. I think he’s genuinely happy every time I come to visit him, because it gives him a break from having to be serious.”
Nicole shares Cody’s story often. “He really paved the way for a lot of other people to get this drug,” she says. “Sometimes he gets annoyed that I talk about it so much, but I want everyone to know about the care he got at MSK.”