Meet Caleb – Neuroblastoma Warrior

"This journey would have been a lot harder without the National Children’s Cancer Society," said Caleb’s Father, Martin.

We were introduced to Caleb’s dear family in early 2017 when he was diagnosed with neuroblastoma, a rare childhood cancer that generally develops in the adrenal glands. Experiencing frequent fevers for three weeks, Caleb’s condition was initially dismissed as a virus. After developing back pain, scans revealed a mass growing in Caleb’s 4-year old body.

He underwent surgery in New York that summer to remove the tumor, but his team of doctors quickly discovered that the cancer was spreading. His family was stunned to hear that Caleb had 25 cancerous spots and they braced themselves for a journey they will never forget.

With chemotherapy, the 25 cancerous spots diminished to four roughly six months after his initial diagnosis. After rounds of radiation and immunotherapy, one spot remained that continued to appear lighter with each scan. Caleb’s bone marrow was clear, and the future looked brighter.

Though Caleb has a weakened immune system and became nauseous during chemotherapy treatments, he remained in good spirits and maintained a positive attitude, and his family was always at his side. When it was time to shave Caleb’s head, his father, Martin, shaved his, too. Caleb’s mom, Chika, and siblings Matthew and Maura, were his constant cheerleaders as well, in hopes of championing a breakthrough.

But as we know, the journey of childhood cancer has its ups and downs. Caleb relapsed in December of 2018 and had to endure three more cycles of chemotherapy the following spring. Scans following chemo were promising with no new tumor development, and the existing tumor in his skull had been stabilized.

Several rounds of immunotherapy followed. Nearly a year after his relapse, Caleb’s scans showed that he was cancer free. Devastatingly, just one month later, a new spot was found on the back of Caleb’s head. He had relapsed again.

His parents were crushed, but remained faithful in a cure.

Additional chemotherapy and radiation began in early 2020 in New York, 700 miles from home.

Post treatment, Caleb was approved for a new chemotherapy and immunotherapy option in Indiana, much closer to his home. Though his family was deeply appreciative of the support they received from the NCCS Travel Assistance Program, having the ability to receive treatment closer to home was a great relief, especially due to the COVID-19 pandemic. Through it all, Caleb’s spirit never faltered. His perseverance and positivity seemed to defy all odds.

November of 2020 marked another important trip to New York to conduct scans. After two years of hearing the devastating news of Caleb relapsing, his scans were finally clear!

Despite finding a new spot in Caleb’s brain in the summer of 2021, doctors are confident that the tumor is not malignant. He remains on antibody treatment and is tolerating it well without side effects and continues to improve.

Today, Caleb’s hair is growing back and he feels great. His parents share that he is doing amazingly well. He’s finally cancer free after two years of grueling treatment. The tiny, stable tumor that stayed with Caleb for so long is finally gone from the scans. The little baker (his specialty is banana bread, which he loves making for the hospital staff) and musician in him is enjoying healthier days. Due to the extensive treatment Caleb received, he has experienced significant hearing loss, but he is embracing his new hearing aids. Caleb and his family look forward to a long-awaited trip to Indonesia to be with extended family in the summer of 2022.