Cody’s rare kidney cancer made him the only kid in a clinical trial

This is a guest post by Nicole Bass, whose 18-year-old son Cody was diagnosed with ALK-positive rearranged renal cell carcinoma in 2022.

Cody’s biggest concern through this whole journey was bowling. He’s on the bowling team for his high school and this year he was inducted into his school’s hall of fame for bowling. The kids are calling him a three-peat because he won the city championships for the third year in a row.

Actually, Cody was down on himself during this year’s championship game because he wasn’t bowling his best. It’s been a hard year. But his oncologist’s office called in the middle of the game – they knew he had a tournament – to say that nothing showed up on his recent scan, no evidence of disease. He said “oh that’s good. I’m busy.” And the next thing I know, he won! He was shocked he won!

Cody’s journey has been anything but ordinary. He was sick with flu-like symptoms every four months for the last year. I would take him to the pediatric urgent care for testing but they just said it was a viral infection. It wasn’t until May 2022 after a few weeks of him being unusually sick that we requested a full blood work with additional tests for Lyme disease and other autoimmune diseases. His pediatrician of 12 years called to tell me Cody was anemic and had a urinary tract infection, but this was normal for 17-year-old girls because they get their periods.

Of course, Cody is a boy! And I’m a medical assistant in a gynecology office; I could tell his bloodwork was alarming. Now I’m beyond annoyed and concerned. I switched dates for our next in-office appointment so I could be there to discuss the bloodwork in person and I believe that saved Cody’s life. The doctor was young and new to the practice. He was very concerned by the results because they were uncommon for boys Cody’s age. He ordered a renal sonogram and the results were not good. Cody had a 15 cm mass on his right kidney and was recommended directly for oncology.

Firstly, I can’t believe this is happening. Secondly, on top of digesting it myself, I have to tell my family and my son and I have no answers. After the sonogram results, his step-father and I sat Cody down and while we wanted to die rather than tell our son about the tumor, Cody’s reaction was the most amazing thing. He looked at us and said, “I’m ok with losing a kidney. I can live with only one.”

We transferred our care to Memorial Sloan Kettering Cancer Center. We met the whole team, the doctor pulled all the scans and showed us how big the tumor was and what else was infected. It was a 16-hour day and by the end, we knew the tumor had to come out.

Cody didn’t fit the criteria for anything. He was too old to be a typical candidate for Wilms Tumor and too young for renal cell carcinoma. Whatever he had was going to be extremely rare.

Cody’s surgery was scheduled last June but we wound up at MSKCC a day early because he had acute appendicitis. The surgery ended up being 8.5 hours while Cody had his right kidney, adrenal gland, ureters, and about 15 lymph nodes removed, plus a wedge of his lung and the appendix.

Cody recovered from surgery quickly but the pathology took a while as they debated whether it was RCC or papillary-looking. Finally, we learned it was anaplastic lymphoma kinase (ALK)-positive rearranged RCC, a diagnosis that’s been seen in less than 20 people, only a couple of which were children. ALK mutation-related cancers tend to show up more often in the lungs.

Unfortunately, chemotherapy and immunotherapy don’t really work for ALK. Luckily, Cody’s team told us a clinical trial just opened for an ALK inhibitor treatment. Cody is the first child in America to be on this trial. Obviously, it makes anybody nervous to be on a treatment when there’s no data on it in kidney. But I have such confidence in Cody’s team, they look at him as a human. And Cody was always there for our conversations with his team – he and his oncologist have a real bromance!

Seeing him on treatment for the trial did hurt because Cody was on eight pills a day. One kidney plus medications can cause a lot of damage – you can’t get something for nothing. Luckily the overall side effects were pretty minimal.

The doctors said Cody would be cleared to bowl 6 weeks post-operation. He could have stayed home from school because his immune system was weakened but he decided to return and properly finish the year. He said, “My team needs me. I’m a senior and captain. This is my year.”

Cody has prom and graduation this year. He’s schedule for a bone density scan and a cancer scan. After that, we’ll go every 3 months for monitoring scans.

He also starts John Jay College of Criminal Justice in the fall. He’s a horror buff and into forensics. He’s a smart kid.

I get asked a lot, how are you alive? I have no choice, I have to do it. I will never say I’m thankful for my son getting cancer, but I’m thankful for the things it’s taught me. I’m not going to pass up on opportunities to be with my kids anymore.

Cody’s really paving the way for a lot of people. Childhood cancer is underfunded and kidney cancer is underfunded. So, let’s start listening to patients and parents when they say something is wrong with their child. It’s unfortunate but it’s nice to finally have a diagnosis because of ALK gene testing and have access to treatment now, even if we have to look for another line of treatment later. If our story can help somebody else to get better quality of life and extended time, we did a great thing.