The hematologist/oncologist ordered another CBC (complete blood count) to check Phoebe’s levels. The results were similar with her other two tests. Her white count was really low. Her neutrophil count was the lowest of all the numbers. A normal range is 25.0-60.0 for neutrophils. Phoebe’s was 5.3. They suspected she had a form of neutropenia. This meant that she had a low amount of the cells that help fight off bacterial infection. They decided to test for the neutrophil antibody to see if it was present in her body. If it was, that meant that she was producing the neutrophils, but this antibody was destroying them.
The antibody test came back positive. What does this mean? What do we do for it?
There was nothing we could do. Her body was producing this antibody that was destroying her neutrophils. They diagnosed her with autoimmune neutropenia. We would have to have blood tests to monitor her levels every three months unless she became sick. Every time she got a temperature of 100.3 we would have to go to the hospital to check her blood levels, and if they were below 500 she would have to be admitted for IV antibiotics and blood smear testing.
Really? 100.3? If my other kids got a temperature like that I would put them to bed, give them plenty of fluids and tylenol. But for Phoebe, we couldn't do that. We couldn't give her tylenol, we couldn't put her to bed, we had to go straight to the hospital.
Now all we could do was pray that we didn't have to go to the hospital, and if we did that she wouldn't be admitted.
It took only a week before we were at the ER with Phoebe. She had a temperature of 100.8, and her levels were well under 500. Phoebe was going to be admitted to the hospital.
Photo: Phoebe playing on an iPad in the ER