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My Son's Brave Battle Against Histiocytosis

Baby born with red blood blisters and histiocytosis

On April 8, 2011 we joyfully welcomed our newborn son, Griffin Price Champlin. When Griffin was born, he had what can best be described as small red blood blisters in several places on his body — a small spot on his forehead, one on his arm, one on his back, and two more penny-sized blisters on his shoulder.

As soon as we brought Griffin home from the hospital, the spots began changing, almost drying up like chickenpox. We made an appointment to see our regular pediatrician. After looking at the spots, he recommended that we take Griffin to see a dermatologist at Texas Children’s Hospital. Thankfully, we were able to get an appointment with Dr. Teresa Wright within a day or two. At five days old, we took Griffin to Texas Children’s Hospital for an appointment with her. We could never have imagined the roller coaster ride we were about to take.

Histiocytosis expert Dr. Kenneth McClain with patient GriffinThe dermatologist felt confident that the spots on Griffin’s body were histiocytes, but to be certain she needed to do a biopsy. She did a punch biopsy of the spot on Griffin’s back. Since Griffin had several spots, Dr. Wright wanted us to speak with Dr. Kenneth McClain, a world expert on histiocytes, who happens to work at Texas Children’s Hospital. We waited an hour or so and Dr. McClain came and took a look at Griffin.

He explained that histiocytes can be internal and was concerned since Griffin had several visible spots. He urged us to begin checking immediately. As you might imagine, our world started to spin. We began with a chest X-ray right then. A few days later we returned to Texas Children’s Hospital for an abdominal ultrasound. Within a week we were back for blood work, which combined with the results from the ultrasound, confirmed our worst fears. Griffin was diagnosed with Langerhans Cell Histiocytosis (LCH) in his liver.

At just 28 days old and seven pounds, a central line was surgically inserted and chemotherapy treatments began. As I reflect on Griffin’s diagnosis and the first year of his life, much of it is a blur. Suddenly, words and tests that were once foreign became our sole focus. Instead of the typical sleepless nights that come with a newborn baby, we were thrown full throttle into the restless, sleepless nights that accompany a seven pound infant undergoing chemotherapy. Rather than being curious about Griffin’s umbilical cord, his young brothers were curious about the long blue line that was sticking out of his chest, the constant trips to the hospital, and the sudden appearance of our Home Healthcare Nurse. What was intended to be a changing table, became a bandaging table. Griffin’s central line required daily cleaning and the weekly bandage changes on tender newborn skin were grueling.

Baby receiving treatment for histiocytosisThroughout the year, Griffin struggled with line infections, landing us in the hospital for several stays. His skin was ultra-sensitive and over the course of the year, Griffin developed allergic reactions to many bandaging cleaners and supplies. In December, after being plagued with central line issues, the doctors determined that Griffin’s line was no longer in place. We made the difficult decision to replace his central line with a PICC line in his arm. Despite all of the challenges that go along with chemotherapy (low hemoglobin, low ANC, blood transfusions, going to the hospital EVERY time Griffin ran a fever), his body responded well to the chemotherapy, and Griffin’s liver enzymes returned to a normal range.

Throughout Griffin’s journey, we relied on the love and support of our friends, our family and our community. We have been touched by the passion and dedication that the doctors and nurses at Texas Children’s embody. Dr. Kenneth McClain walked us through Griffin’s journey with LCH with grace, purpose, and heart. Griffin, who just turned two, is currently in remission and is thriving under the continued care of Dr. Kenneth McClain.

Histiocytosis patient Griffin celebrating birthday

For more information about histiocytosis, watch the video below:

Amy Champlin, mother of patient