On Sunday, December 28, 2014, Leala woke up with a stuffy nose, the poor thing had a cold. After several days she developed a tight chest cough which began to loosen after a couple days. From what we could tell the cold just had to work its way out and then she would be better. One week later, on Sunday, January 4, 2015, the cough was still quite intense and she had a fever, so we took her to the ER. She was diagnosed with Upper Left Lob Pneumonia and was prescribed antibiotics.
On the afternoon of Tuesday January 6, a rash started to appear on her right lower leg, by later that night it had spread to both her legs. After researching a bit Anna figured out that it was a petechiae rash, which could be a very concerning symptom of underlying issues.
By Wednesday morning, January 7, the rash had started up her torso and she still had a fever, so we called our family physician and took her in. We were then advised to take her to the ER at Emanuel Children’s Hospital where we had blood work done.
Wednesday evening we met with a doctor who told us that Leala needed to be admitted immediately and needed to get a blood and platelet transfusion, because her red and white blood cell and platelet levels were extremely low. As we talked with the doctor more she told us that she was concerned that Leala may have Bone Marrow Failure or Leukemia and had scheduled a bone marrow biopsy for the following morning.
Thursday morning our doctor, Dr. Richards, came and told us that she had noticed Leala’s liver enzyme levels were elevated which alerted her to look at her ferritin levels, which were extremely high. This tipped her off to the fact that Leala may have a condition called Hemophagocytic Lymphoproliferatice Histiocytosis (HLH). This disease according to Cincinnati Children’s Hospital is a disorder of the immune system in which too many infection-fighting cells are produced and activated, causing damage to organs. The first word, Hemophagocytic, actually means “blood eating”. Leala did amazingly well during her OR visit were she had the bone marrow biopsy, a LP, and an PICC line put in.
On Friday, January 9 after a confirmed diagnosis of HLH Leala started treatment. As of right now she will be getting steroids twice daily and chemotherapy twice a week