Stand with Quinten Against Castleman

Quinten was admitted to Children’s Nebraska Hospital on February 19, 2025. He had been sick for about a month, progressively getting worse. He’d visited the pediatrician twice, once a week, but nothing had changed. On his third visit, the pediatrician said he had lost 17 lbs since his first visit and was only more sick, so they sent him to Omaha.

Once admitted, he just got worse, and despite all the tests, scans, and medication, they had no answers. By this time, he had not been able to eat for a month; anything he ate or drank came right back up. His spleen was very swollen, as was his liver. He had an acute kidney injury. He had fevers on and off. He was in a lot of pain all over his body. His heart rate stayed in the 130s, and his blood pressure was elevated. He had CT and MRIs done, EKGs and echocardiograms, blood test after blood test. Then he had a complete GI scope, bronchoscopy, and lymph node biopsy. A week later, he needed another lymph node biopsy, bone marrow biopsy, and a port for hemodialysis placed. By now, his kidney function was only 20%.

The diagnosis finally came—idiopathic Multicentric Castleman Disease. This rare disease is diagnosed in 1000-1100 cases in the US each year. Very few, so very few there aren’t even numbers, of those are kids. It is unknown whether Castleman disease should be considered an autoimmune disease, cancer, or infectious disease. It causes the immune system to become hyperactive and attack one’s own body with a vengeance. IMCD is a lifelong disease. It can be treated, how efficiently is questionable, and treatment must be maintained throughout the rest of one’s lifetime. Corticosteroids and immunosuppressants can help in some cases. For Quinten, that did not help, and he requires chemotherapy and immunosuppressants. He required hemodialysis—a process where one’s blood is removed from the body, run through a series of filters to clean it, and then replaced into the body. He’s required multiple blood transfusions and platelets.

After 40 days in the hospital, he came home for one whole day only to be readmitted for two days due to a fever. He is home again as of April 4th. He requires medication, constant monitoring, and frequent doctor visits. Funds raised will be used to pay for his ongoing care.