Organized by: Cindy Humphries
Victoria was diagnosed with a rare and incurable disease called Castleman Disease with a secondary and more rarer secondary disease called TAFRO syndrome in January 2016. Her journey started in December 2015. Since then, she has had eight ER visits and two hospitalizations, one of which lasted nine weeks. During the nine weeks in the hospital, she had multiple organ failure, including renal failure. She had dialysis that lasted five weeks. The doctors finally started her on a chemotherapy-like drug called Siltuximab, which is an IL-6 inhibitor or an immune suppressant. She was out of work as a special needs aide for a middle school for 4-1/2 months. Her medical exceeds $15,000. Plus she has student loan debt in which the lenders will not work with her. During the summer she saw two specialist out of state. The saw doctors at The National Institute of Health and UPenn Hospital. Presently, her labs are stable. She goes every three weeks for the Siltuximab infusion which costs $20,000 and this will be lifelong. Her kidneys have come back at 75%. She has Stage 3 kidney disease. She is 90% remission. With this disease, it is not IF she will relapse, but when. Our family thanks you for your prayers and support.