My daughter’s name is Sydney L. Johnson. I received a worrisome phone call from her dad while at work. She had just left the eye doctor’s office where he saw major swelling at the back of her optical nerve. A level “four” which was the highest he had ever seen. The optometrist suggested that we take her directly to the ER for further evaluation. We spent several hours in the emergency room and was finally told later that Sydney had a brain tumor. BRAFV600E mutated Ganglioglioma. A benign tumor at the brain stem with aggressive cysts mutation. Sydney has had 3 brain surgeries, and one port placement surgery since August 13, 2016. She has also received 12 rounds of traditional chemotherapy over an 18-month span, and a new oral chemo treatment which she was only capable of withstanding 4 rounds. She stayed too sick while on the medications, which by the way was the absolute ONLY medication that has shrunken the tumor thus far. She has been hospitalized several times outside of her surgeries due to complications from chemo. Sydney is currently awaiting future chemo treatments options yet takes medicine daily for seizure activity. She has a team of doctors & nurses whom have stated that her road to recovery could take several years on up to her lifetime.
Sydney is scheduled to attend Hollywood,CA this year for her Make-A-Wish experience! This trip to her would mean, “living a dream I’ve always wanted: to feel like a huge star!”. As her mother, I am excited to see the look on her and her brother’s face when they will both board an airplane for the first time and witness an entirely different world outside of their normal everyday life. Our family has been through so much pain, and tribulation. I just want to see Sydney get her smile & joy back. She has been labeled as the “strongest girl in the world” by her peers, countless supporters, prayer partners, family and friends. And I wholeheartedly agree.
Although her road has been rocky, and the doctors’ diagnosis have been scary, we are faith walkers! And we believe that Sydney is 100% healed. Her testimony and strength shall reach & touch millions.