NJ Boy with Castleman Disease Returns Home After “Largest Mass Ever” Removed

10-year-old Joey Koslowski doesn’t let the small…err, the big stuff get him down. According to MyCentralJersey, the boy is “the youngest child to have the largest mass in the world” caused by Castleman disease. But following surgery, Joey has returned home. His family is now advocating for positivity and great patient care.

Castleman Disease

This rare lymphoproliferative disorder causes abnormal cell growth, leading to enlarged lymph nodes or benign tumors. Unicentric Castleman disease causes one tumor in one lymph node, while multicentric Castleman disease causes widespread tumors.

The cause of Castleman disease is unknown. Some researchers hypothesize that it is caused by excess interleukin-6 (IL-6), a protein which contributes to immune response. Others think that it could be caused by human herpesvirus 8 (HHV-8). Up to 50% of people with multicentric Castleman disease have HHV-8. However, there is no definitive cause.

Symptoms of unicentric Castleman disease include pressure in the chest or stomach, a lump in the groin, neck, or underarm, and unexplained weight loss. However, most people with unicentric Castleman disease are asymptomatic. For multicentric Castleman disease, symptoms include pressure in the chest and stomach, lumps in the groin, neck, or underarm, unexplained weight loss,  skin rash, organ enlargement, night sweats, fever, and nerve damage. If untreated, multicentric Castleman disease can lead to lymphoma, infection, and organ failure.

People with HIV, POEMS syndrome, malignant lymphoma, or Kaposi’s sarcoma are more at risk of developing Castleman disease. If someone is experiencing fatigue, fever, and weight loss, alongside a lump in the armpit, neck, groin, or collarbone, they should visit their doctor immediately. Learn more about Castleman disease. 

Joey’s Story

Recently, Joey spent weeks at the Children’s Hospital of Philadelphia (CHOP) following a six-hour open heart surgery to remove a 7-pound tumor from his right lung and aorta. The mass, says his father Joe, was unprecedented, particularly for someone Joey’s age.

As he grappled with his condition, Joey also experienced whooping cough, a collapsed lung, rapid weight gain, hair loss, low white blood cell counts, and chest-drainage tubes. He also required the assistance of a ventilator. After his initial diagnosis, Joey received chemotherapy and R-CHOP, a medicinal combination of rituximab, cyclophosphamide, hydroxydaunomycin, oncovin, and prednisone.

Considering the medication and the hospital he was treated at, it’s no surprise that Joey told himself to just “Keep Chopping” during his ordeal! Funnily enough, the phrase also represents the motto of the Rutger Scarlet Knights, Joey’s favorite college football team.

The entire Rutgers sports department supported Joey and his family during his treatment. From football and men’s basketball players and coaches to those involved in baseball and wrestling, Rutgers never let Joey down. He received personalized videos, Scarlet Knights clothing, and cards.

COVID-19 and Castleman Disease

COVID-19 complicated Joey’s treatment and recovery. The novel coronavirus led to nearly 3 million diagnosed cases worldwide, with 208,000 deaths. There is little research on the intersection between COVID-19 and other conditions. But doctors believe that immunodeficient individuals are more at risk.

Joey was already self-isolating prior to COVID-19 because his chemotherapy and rituximab treatments for Castleman disease compromised his immune system. He participated in online schooling. Only once did he leave the house to attend a basketball game at Rutgers. Although he had to leave before the game was over, his father tuned into the radio station on the way home. As the game ended, the student section began chanting Joey’s name.

Teamwork Unlimited

More recently, Joey was slated to partake in the 13th annual Autism Awareness Baseball Challenge sponsored by the Teamwork Unlimited Foundation. Unfortunately, the event was cancelled due to COVID-19. Developed by Trisha and Mike Garlatti, the Teamwork Unlimited Foundation seeks to raise awareness, and stimulate advocacy, for those with autism or other medical conditions. Prior families supported had children with rare cancers.

During the 20 games that make up the baseball challenge, the beneficiary (in this case, Joey) receives a cash donation. Children with either disabilities or conditions are also able to throw the first pitch of every game. Despite the event not happening, the Teamwork Unlimited Foundation still made a donation to Joey’s family.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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