Support Mileva Repasky's fight to beat Castleman disease!
My daughter Katie was diagnosed officially with Castlemans disease on my 31st birthday shortly before her 2nd birthday. It took 9 months to get that diagnosis. When she was 15 months old, I noticed a large lump under her arm while I was changing her clothes. The lump protruded under her arm and was about the size of a golf ball. After MONTHS of blood work, ultrasounds, tests, 3 different specialists, and scans, she finally under went a biopsy where it was then determined she had Hyaline Vascular Unicentric Castlemans disease. She did not have many symptoms (that we knew of) at the time of her diagnosis.
Since the initial biopsy, she has undergone 15 CT scans, 11 ultrasounds, and 2 attempts at a complete resection of the infected lymph nodes. Her first surgeon was in Kansas where he was able to completely remove all the level 1 and 2 nodes in her arm and chest cavity. He was not able to remove the nodes that were in her level 3 area because they were too deep and too close to her auxiliary vein. We then moved to Texas and she underwent a second attempt at removal, which produced the same results. They were not able to remove the level 3 nodes, which are still very enlarged. Since that last surgery she has had scans to monitor the growth of the remaining nodes which continued to grow. She has developed joint pains, headaches, fatigue, and night sweats. She does not sleep well. Her appetite has become smaller, and her energy level has lessened. She has a lot of good days, but she seems to have a great deal of bad days as well. She has been on different versions of chemotherapy and immunotherapy medicines for the past 2 years including methotrexate, rituximab and cytoxan.
Our greatest hardship with this disease is that she seems to be the youngest child to be diagnosed with this disease and no one knows what to expect. The fear of the unknown with this disease can be difficult.
I want to continue to do what I can to get Katie’s story out there so that the next child who has this same thing might have more answers available to them. I want to do whatever I can in order to help bring a cure about for this disease. We have developed such an amazing family through this organization!
This is a Shakespeare quote that we believe defines our daughter....“Though she be but little, she is fierce” That small phrase completely and perfectly describes our daughter and the strength and courage she has shown throughout the 3 years of her life battling this disease.