Every week since Demi started the Medication regimen for CT we have been drawing a CBC with differential (complete blood count to tell us specific information on how she is doing). We have been watching her neutrophil (The cells that fight off germs) count drop each week and even changing her medications to hopefully stop that. This week her neutrophil count has dropped in the severe range. This is even after changing her dosages in efforts to keep this from happening.
Demi’s doctor had to temporarily stop one of her medications to allow for her body to recover. I had mentioned previously that I really didn’t want to stop her treatment because it gave me fulfillment in that I’m doing something to help her. So obviously stopping one of her medications slows that process. I have been actually impressed with how much it’s not bothering me to stop. I guess because now that we are in the middle of it, I just want her lab values to be back in the healthy range so we can return to our “normal.”
We have been stuck in our house without visitors for the last week as she was approaching critical levels. I was trying to avoid stopping her meds if possible. The plan was to give her every chance for the labs to increase by hopefully not introducing any germs to her that could make that difficult to accomplish. Now we will be extending this for the next week. We even had to cancel some plans that we had to leave town today and head to our favorite little place in south LA.. Grand Isle.
We are praying her neutrophil to increase quickly so we can resume her treatment. Also praying for no exposure to germs.
Meanwhile.. our girl made 4 months old and is showing some impressive skills and we are totally obsessed with her! We know she has a visual impairment but it sure doesn’t seem to be stopping this little warrior! That’s precisely what we expect too!