Blastic Plasmacytoid Dendritic Cell Neoplasm
Kylee was diagnosed with a very rare form of Leukemia officially on May 2, 2016.
We began our journey the beginning of 2016 not knowing what battle was ahead of us. She had what looked like a bruise on the side of her face that was not going away and was actually growing. After visits to the pediatrician, dermatologist and plastic surgeon, we did a punch biopsy on the cheek to determine what the mass was next to her eye. It never hurt but changed consistency and shape over time. The biopsy came back that it was a pseudo lymphoma…a mass of white blood cells attacking an infection. At the time, we didn’t know what the infection was.
In February, Kylee had a spot pop up on her chest. As time progressed, the spot changed from feeling like a pea under the skin to a larger flat area of a different color. As a mom, I had a feeling. I got her into UK Children’s that week. We went through 5 more skin biopsies on her back of different spots. These were sent to 5 different pathology labs coming back with an unconfirmed diagnosis. They sent the biopsies to the National Cancer Institute in Bethesda Maryland to get an answer. They needed additional skin tissues for diagnosis. We got a final confirmation on May 2nd that Kylee had this rare form of leukemia for adolescents…number 26 in the world under 21 to be diagnosed.
We started treatment the day after confirmation. We checked into UK Children’s hospital Tuesday morning, she was taken in for an echo, went into surgery to have a port surgically inserted into her chest, a bone marrow biopsy, and a spinal tap. That evening she had her first chemotherapy treatment.
We are going day to day with the treatment plan. There is not a current prognosis that is in place due to the rare number of cases in people under 21. At this time, the treatment plan that was designed by oncologists across the country is working well. We will stay on this game plan for the next 2 ½ years or until the plan changes based on effectiveness.
We began our journey the beginning of 2016 not knowing what battle was ahead of us. She had what looked like a bruise on the side of her face that was not going away and was actually growing. After visits to the pediatrician, dermatologist and plastic surgeon, we did a punch biopsy on the cheek to determine what the mass was next to her eye. It never hurt but changed consistency and shape over time. The biopsy came back that it was a pseudo lymphoma…a mass of white blood cells attacking an infection. At the time, we didn’t know what the infection was.
In February, Kylee had a spot pop up on her chest. As time progressed, the spot changed from feeling like a pea under the skin to a larger flat area of a different color. As a mom, I had a feeling. I got her into UK Children’s that week. We went through 5 more skin biopsies on her back of different spots. These were sent to 5 different pathology labs coming back with an unconfirmed diagnosis. They sent the biopsies to the National Cancer Institute in Bethesda Maryland to get an answer. They needed additional skin tissues for diagnosis. We got a final confirmation on May 2nd that Kylee had this rare form of leukemia for adolescents…number 26 in the world under 21 to be diagnosed.
We started treatment the day after confirmation. We checked into UK Children’s hospital Tuesday morning, she was taken in for an echo, went into surgery to have a port surgically inserted into her chest, a bone marrow biopsy, and a spinal tap. That evening she had her first chemotherapy treatment.
We are going day to day with the treatment plan. There is not a current prognosis that is in place due to the rare number of cases in people under 21. At this time, the treatment plan that was designed by oncologists across the country is working well. We will stay on this game plan for the next 2 ½ years or until the plan changes based on effectiveness.