“Though she be but little, she is fierce!” - Shakespeare
Mileva says that phrase perfectly describes her 3-year old daughter, Katie, who is battling Castleman disease (CD), and the strength and courage she has shown throughout her battle.
CDCN: Tell us a little bit about yourself and your daughter.
Mileva: I am currently a stay at home mom to 3 kids (ages 1yr, 3yr, 7yr) working on my masters degree in psychology. We are currently living in Texas where my Active Duty Army Husband is stationed. We have moved 7 times in the past 11 years and have been through 3 deployments together as a family. Katie is our middle child, and 1st daughter. She is a beautiful vibrant little girl who has been the center of strength for our family. She loves anything princess and spends a great deal of time singing and dancing the day away.
CDCN: Can you tell us about your daughter's diagnosis (e.g., when she was diagnosed, her first symptoms, etc.)?
Mileva: She was diagnosed officially with Castleman disease on my 31st birthday last year shortly before her 2nd birthday. However, 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 underwent a biopsy where it was then determined she had Hyaline Vascular Unicentric Castleman disease. She did not have many symptoms (that we knew of) at the time of her diagnosis. Since the initial biopsy, she has undergone 4 CT scans, 3 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 axillary 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 2 scans to monitor the growth of the remaining nodes. Though the nodes have not grown much in size since last surgery they have not gotten smaller and her symptoms seem to be becoming more common. She does not sleep well, she spends a great deal of time at night saying something hurts but we can not figure out what. 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 more where she just wants to lay on the couch with me and is ‘sad’.
CDCN: What has been your greatest hardship with your daughter's Castleman disease?
Mileva: 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 and her not being old enough to communicate with us how she is feeling has also been very difficult. For us the hardest thing is not knowing how she is feeling, what to expect, and if this will be with her forever. For Katie I think the hardest thing is that she does not know what it feels like to feel normal.
CDCN: What was life like before your daughter's diagnosis?
Mileva: Life for us prior to her diagnosis was pretty normal. Busy schedules, enjoying family and traveling and just not having to worry about all the what ifs and unknowns.
CDCN: What have you learned about yourself since your daughter's diagnosis?
Mileva: The most important thing I think we have learned is the importance of family and faith in this struggle. What I have learned most about myself in this struggle is how important it is to be Katie’s advocate in this fight and also I have learned how strong I truly am and how much I value my relationship with God and my family. I have also learned so much about strength, courage, and love from my daughter.
CDCN: Why do you want to be a Castleman Warrior?
Mileva: I want to be a Castleman’s Warrior so that I can help in the fight to learn more about this disease. I also want 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 as well as be a part of a community that is also dealing with the fear of the unknown so that when Katie is a little older and can understand a little more she knows that she is not in this alone. I am her biggest advocate and I want to do my part in this fight for her.
CDCN: Anything else you would like to add?
Mileva: I started a blog on Katie’s fight which can be found at http://katiesfightagainstcastlemans.blogspot.com/2014/09/from-begining.html. We also have used a quote from Shakespeare to describe Katie that I would like to share: “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.
We want to continue recognizing Castleman Warriors across the world by giving you all a chance to share your stories in our monthly newsletter. If you’re interested in sharing your experience, please e-mail us at: firstname.lastname@example.org.