When Casey turned 8 years old, we noticed that he started to have frequent headaches. Every few weeks they were getting worse and occurred more often. He saw so many different doctors: our primary doctor, the eye doctor, the ear, nose and throat specialist, the neurologist and even a chiropractor. He began missing so much school. The headaches progressed, and then he started complaining that his back hurt. The poor kid would pant and moan in his sleep! The chiropractor had noticed slight scoliosis and told us to see an orthopedic surgeon at Johns Hopkins Hospital to see if he somehow injured himself.
From the beginning, we felt like they didn't believe us when we said he was getting worse, and at this point a year had gone by from when his symptoms first started. The doctors told us that since we were so concerned, they would send him for an MRI. Our doctor called afterwards saying they saw a mass on his spine and he needed a biopsy. She kept saying it was probably something benign and they weren't overly concerned.
The biopsy was performed on June 21. I remember trying to read the doctors' faces to see if they looked concerned, but I saw nothing. On Friday, June 25, our world came crashing down when the orthopedic surgeon called and said she was sorry but the mass was not benign. It was nothing like they thought it would be. His mass was a tumor caused by a rare disease called Langerhans cell histiocytosis (LCH). We were sent to the pediatric oncology unit to meet with a specialist.
At this point, Casey endured even more tests and scans to learn how far the disease had progressed. We determined he had a single bone lesion, but the lesion was large; his T-II vertebrae in his spine was completely gone and the tumor was filling the entire space where the vertebrae should have been. On Tuesday, July 27, Casey had surgery to have a port-a-catheter inserted into his chest, and he received his first round of chemotherapy. When we explained to Casey all that was happening, he reassured me as only a kid can do, "It's okay. I'm not sick; I just have a tumor."
Casey is now in remission and the past couple of years have been a big blur with his diagnosis and treatments. However, with Casey's drive and motivation, we have become a family united to spread awareness and raise funds to help find better treatments and, ultimately, a cure for histiocytic disorders. For this reason, we are honoring Casey and all the Histio Warriors by hosting a fundraising event to benefit the Histiocytosis Association. Please join us on Saturday, February 16, 2019, for Casey's Bull Roast for Histio. Together we will find a cure!
The Jenkins Family,
Theresa, Jeff, Casey, Brady, Rory and Zoey
Get The Word Out