Our second son, Jeffrey, was born after a long eight and a half years after our first son. Our miracle baby! At birth his platelet count was low but after a couple of days corrected itself and was written off to jaundice. We took Jeffrey home thinking we had a healthy baby boy. Four months later symptoms began.
Jeffrey had a strange, unresponsive diaper rash, what looked to be cradle cap, and white “cottage cheese” looking stuff in his mouth. Doctors initially attributed these to common baby issues, but we insisted that it wasn’t. After four months of being camped out in doctors’ offices, the diagnosis finally came: Langerhans cell histiocytosis (LCH). We couldn’t even pronounce it, let alone grasp what was happening. We were told there was only skin and bone involvement and six to twelve months of chemo should do the trick. But once Jeffrey started chemo it just seemed to make the disease angry. Jeffrey just got sicker and sicker. It moved to his spinal fluid then his liver, spleen, kidneys, and brain. Then the diagnosis changed from LCH to hemophagocytic lymphohistiocytosis (HLH).
Jeffrey was transferred to a Texas hospital for a bone marrow transplant. After three months the doctors decided he was well enough to do the transplant. It seemed to be working; his bone marrow was making his own blood and his blood counts were coming up to normal. At fifteen days out the doctor told us there was nothing wrong with him now that they couldn’t fix. But then the next morning, on Thanksgiving Day 2001, Jeffrey crashed. The doctors worked on him until noon to no avail; our miracle baby went to heaven at 2:30 PM.
For those of us who loved Jeffrey, it will never seem right that he is gone. Things like this are not supposed to happen to people like him, but yet they do. We owe it to Jeffrey to live the best lives we can live as individuals and to raise as much money as possible to further research on HLH so that others can have the chances he didn't.
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