Samuel Brown Greathouse showed symptoms of basic childhood maladies: cradle cap, diaper rash, and what appeared to be an ear infection. His pediatrician referred us to an oncologist because a small blood sample showed low counts. Samuel was nine months old and began a battery of tests to see what he didn’t have.
A few days later, the dermatologist pathology revealed the rare blood disease Langerhans Cell Histiocytosis (LCH). Months of chemo, long admissions, multiple blood transfusions, and a couple of surgeries followed. The chaos of the disease started to quiet. From there, his team of oncologist and hematologist prescribed maintenance chemo. Evidence of his disease reappeared along with another unfortunate medical anomaly–fibrosis of the bone marrow. Samuel became one of only 10 children in recorded history to have this happen.
He was prepped for a bone marrow transplant (BMT) and a 10:10 match was found. Unfortunately, it was not to be so for Samuel. His bilirubin rose to a level that disqualified him for a BMT. The hospital wouldn’t go through with the transplant. He passed away on Sept. 17, 2007 at the age of two. From diagnoses to death took 16 months. There is no known cause or cure for LCH.
My advice: never stop asking questions. If you have a good doctor, they would welcome your questions and use them to provoke their own thinking and research. If your doctor does not like your advocacy or questions, try to find another doctor. You need to establish a good and mutually-respecting relationship with your doctor.