Written by Taylor and Amanda LaClaire
Taylor was a healthy, active kid… until middle school. Around 12 years old, he contracted a severe eye infection that caused his whole life to change. The doctors treated the infection aggressively- instead of focusing on his grades and social life, Taylor was reduced to visiting the nurse’s office hourly for eyedrops. At night, he was waking up every other hour to continue treatment. In the end, Taylor had to have a cornea transplant to save his eye. Afterwards, the doctors discovered Taylor had contracted a common water born infection, one that his body should have been able to fight off. As he would later discover, the infection was not the only culprit.
Soon after dealing with the eye infection, Taylor’s CVC started crashing every few weeks. Doctors would say “some people are just sick”- a response he would hear frequently for several years. By now, Taylor was entering high school. The medical struggle which began in sixth grade seemed to be never-ending. That was until the light at the end of the tunnel appeared. Taylor’s pediatrician happened to attend a conference where he learned about neutropenia, and afterwards suggested this could be the cause of Taylor’s issues. Soon after, his mother came in contact with a woman who knew of The Registry and signed Taylor up immediately. By Taylor’s sophomore year of high school, his dosing of Neupogen as well as his health were finally under control, and things were beginning to turn around.
With his neutropenia in check, Taylor resumed living his life with complete freedom. While in high school, he went on a week-long mission trip to a remote part of Mexico. After graduating, he attended college at the University of Georgia, a thousand miles from home and a trusted doctor. It was a scary moment for his parents, but Taylor managed his medicine well for several years and eventually found a hematologist nearby who would run periodic blood tests. After making it through college without a single neutropenia-related illness, he moved to crowded, bustling New York City. There, he found a well-versed blood doctor who helped him wean off Neupogen completely.
Taylor considers himself very fortunate and referred to the Registry and National Neutropenia Network as “the only reason I’ve able to live a normal and healthy life.” It is this sense of indebtedness, and his awareness of the many people still struggling with neutropenia daily that led him to become a board member.
When Taylor looks back at his teenage years and the roller coaster ride of being diagnosed with neutropenia, he summarizes his experience with a word: perspective. He admits that while in middle school, he thought that everyone else was fine and healthy while he had to carry this burden, but he now recognizes that everyone “has their neutropenia” (their own personal challenge). Despite the difficulties he experienced in the beginning, neutropenia has taught him to persevere and make the most of every situation with the goal of improving it.
Taylor is frequently approached by others regarding his “weaning off” of Neupogen. For a little more background, after many years of taking Neupogen, Taylor’s doctors thought his counts might have leveled off on their own. He underwent several years of close monitoring and regular blood draws, at which point his doctors determined that his counts had in fact normalized and Neupogen was no longer necessary. Taylor’s outcome will not be the case for most people with cyclic neutropenia, and everyone with questions about their own diagnosis and treatment is encouraged to speak with their doctors.
His message to those with neutropenia: Keep your head up and stay focused on your “light at the end of the tunnel”, even though every day can be a rollercoaster. While everyone’s path is different, know you aren’t alone, and the Registry and Neutropenia Network are there to help you along the way.