Sebastian Rickmann

My son Sebastian was diagnosed with NF1 when he was 3 years old. Until he was 10, his only real problems from it were some minor developmental delays. Then in February 2020, during a routine x-ray to check of his scoliosis, they found something that shouldn’t be there. After an ultrasound, MRI, and a lot of bloodwork, it was determined that Sebastian had a tumor on his right adrenal gland, most likely a pheochromocytoma, which is often benign but produces adrenal hormones so it can be dangerous. That April, he had surgery to remove the tumor and his entire right adrenal gland. A few weeks later the results showed it to be a very rare type of tumor called a composite pheochromocytoma, because it had patches of neuroblastoma, which is a type of cancer. Sebastian has spent every 3 months since the surgery getting further testing to ensure no cancer spread anywhere else in his body. So far all his check-ups have been clear and he is now able to go 6 months before his next check-up. While this experience has been terrifying, we are also eternally grateful for all of his wonderful doctors and that he is a happy, healthy, cancer-free, 12-year-old!