This is for my sweet baby girl, Brielle. Our world changed on April 13 when the ER doctor sat down in a chair next to me and said, “I’m going to have a long conversation with you.”
You know it’s never good news when something like that happens. So, she preceded to tell me that night that her blood work and CAT Scan show signs of histiocytosis. She said 3 in 1 million babies would get this a year.
It’s a very rare cell abnormality, and she has 2 collections of abnormal cells by her ears. One is bigger than the other. The bigger one has taken the place of her skull bone by her right ear.
Our heads were just spinning that night, but once we looked further into it we were relieved to find out it is treatable and should not be life threatening, however, she will have to be checked for the rest of her life to make sure it doesn’t flare up after treatment.
After x-rays, ultrasounds, biopsies and an MRI, she was diagnosed with Langerhans cell histiocytosis (LCH). She will now undergo a year’s worth of treatments with the first 6 weeks being weekly trips to Akron Children’s Hospital in Akron for chemo injections in her medi line and daily doses of prednisone. After that, it will get reduced to every 3 weeks for the remainder of the next 12 months.
My 8-month-old baby has a long road ahead of her, but we are optimistic and relieved her prognosis is positive. All the while she has been such a trooper and doing absolutely everything a 8 month old should be. She truly lights up our lives!