Nov 27, 2019 Latest post:
Apr 18, 2021
We thought this would be an easy way to keep everyone updated about Caleb. Caleb started having leg pain in September. His pain got more frequent and more intense so we got an appointment with his pediatrician. They did X-rays, an MRI and blood work. At first they thought the lesion on his left femur was a bone cyst from the X-ray but the MRI indicated it might be something else. We were referred to UNC Orthopedics and the Children's Cancer Center at UNC. We had our appointment at the Cancer Center on November 26, 2019. They are not able to tell exactly what kind of bone lesion Caleb had just based on the MRI images. They recommended a bone biopsy. We have an appointment for Tuesday December 3, 2020 at UNC for the bone biopsy. The biopsy showed Caleb has Langerhans Cell Histiocytosis (LCH). In January 2020 Caleb had a PET so see if there were any other LCH lesions, and there were not. So we moved onto treatment which was similar to his bone biopsy but with treatment of steroids at the lesion site in his femur. Caleb's steroid treatment was in February 2020 and he responded well and his pain went way for a little over a month. Then we went back to UNC in April 2020 because his pain had returned. X-rays showed the lesion had shrunk so they concerned because he was still having so much pain. After more x-rays and an MRI on July 2nd t hey found a second LCH lesion, a bigger one, in his left hip bone. We went for another PET scan on July 14, 2020 to make sure there were not more lesions, and the scans showed that there were not. Then we moved onto treatment. Surgery was out because of where the hip lesion is located. The steroid injection into the bone was out because we had already done that and it did not get rid of the first lesion in his femur completely. So our option for treatment now is IV chemotherapy and oral steroids. In order to have the IV chemotherapy Caleb will need to have a minor surgery to put a port-a-cath into place to receive his chemo treatments. Once the port is placed he will have treatments once a week for a month and then once a month for 6-12 months.