Our story with Castleman Disease began in 2001, when Brianna was 3 years old. During the four days out of town for my grandfather’s funeral, her symptoms worsened. She had a very high fever, was lethargic, and her belly was very distended and firm. I took her to the ER out of town, and they did an abdominal x-ray ruling out constipation and peritonitis. They recommended taking her to her primary care physician once we returned home since she already had a busy medical history. You see, Bri was born 11 weeks premature and spent her first 3 months of life in the hospital. She also had open heart surgery when she was 9 months old. She came home on oxygen and eventually was weaned off after her heart surgery. So now, at 3 yrs old we were trying to catch her up on fine motor skills, gross motor skills, and speech. She was already being followed by a special care clinic at Children’s Mercy Hospital in Kansas City, Missouri. When we got back into town we made the follow up appointment. She ended up being admitted because her blood work was abnormal and she looked very sick. Also, she had several enlarged lymph nodes, the largest under her right armpit. Things went downhill very quickly. She ended up in the pediatric ICU sedated, on a ventilator, and continuous dialysis. She was in the beginning stages of multi-organ failure. For 3 months, I sat there staring at my dying child, helpless and not knowing what was going on. The doctors were clueless as to what this could be. After her second hematology/oncology consult and a biopsy of the lymph node in her armpit, the diagnosis was made. For a second, I felt relief…until they told me what it was and what to expect. Multicentric Castleman’s Disease. Hate is a strong word, but I HATE this disease! The hospital had never seen a case of it, and there really was not a lot of information about treatment, especially in children. I was told her prognosis was 2 years…2 years to live! I felt so terrible for Bri, I mean she had already been through so much in her 3 years of life. So began our journey to fight. We went through multiple rounds of chemotherapy with Rituxan and other agents, constant steroids, surgeries, radiation, and a bone marrow transplant. With all of this, we were able to suppress the disease process for months at a time, but we never went into remission. Bri constantly had a low white blood cell count, and very low platelets (sometimes even 0!). So she was never able to attend public events, even school. We were constantly having to watch for bleeding, and in fact had a very serious bout with internal bleeding. But through all of this, Bri still had a smile on her face. The kind of smile that would light up the room. She had an impact on EVERYONE who met her. She taught us so much! Our journey ended on 09/19/2005, 4 years after her diagnosis, and one day before her 8th birthday. I know her soul had a lot of fight left, but her poor little body couldn’t keep up. Since her death, I went back to school to become a registered nurse and worked several years on the same floor that she was a patient. And now, I work in research. I understand how important research is, and must happen in order to advance knowledge, treatment, and possibly even cures for diseases. I believe Bri was an angel sent to me, for a bigger purpose. We must bring awareness to this disease, and advance the research that is being done!