On August 13, our lives changed. Our youngest daughter, Meagan, had an MRI because she had a headache that wouldn’t go away and it was starting to affect her vision. The doctor was not going to do the MRI because she said our insurance wouldn’t cover it because there was no reason for it to be done at that point. But, as a mom, I pushed it, and said we would just pay for it our of pocket if we had to, because I just knew something was wrong. About 3:45pm, just a few hours after the MRI, we got a call saying our baby had a brain tumor, she was a month away from turning 21. The following day, we had an appointment with a neurosurgeon, Dr. Youssef, at University Hospital. He let us know that Meagan would be going in on Wednesday for brain surgery. She had to see the ophthalmologist to check her vision, her vision in her left eye was 20/800, she was legally blind on that side, so that is the side they would do the surgery on, so if anything happened, it wouldn’t be different. On August 20, she went in for a 5 ½ hour brain surgery.
Meagan’s biggest worry was Dr. Youssef shaving her head for surgery, and she never cut her hair! When the surgery was over, her neurosurgeon let us know that he wasn’t able to remove all of the tumor without causing permanent damage or her dying, but he said her vision was being affected because the tumor was resting on her optic nerve, and when he removed the tumor, her optic nerve went back to normal. After further testing, we found out her tumor was malignant, which means it can spread, and it was a very aggressive growing tumor. Her tumor was a intracranial non germinoma germ cell tumor with markers positive or a NGGC tumor.
She started chemo on September 8, 2014 because without this treatment, she only had 3-6 months to live. As her neurooncologist said, if you get a brain tumor, this is the one you want because it is curable. She had to do 6 rounds of chemo for 3-5 days every 21 days, as long as her labs came back okay, for the next 3 months followed by 30 rounds of radiation. The chemo was harsh…it made her so sick, and just as she was feeling better, the next round of chemo came up. She had to receive blood and platelets, and how thankful we were after she received those transfusions, because she felt so much better and looked so much better.
She had to have MRI’s of her brain and spine, after each round of chemo and had to have spinal taps after the first 3 rounds. After all treatment, Meagan took some time to gain her strength, but she was very ready to get back to a normal life, and after a couple of months, started back to work slowly, and that really helped her to feel better. Her hair started to grow back, and it came back very dark brown, it was dirty blonde before her chemotherapy. Over the next year, she continues to have MRI’s of her brain and spine every few months, and appointments with her neurooncologist, her neurosurgeon, endocrinologist, and the ophthalmologist.
She is now 2 years tumor free, and only has to see her doctors once a year. She does have some permanent damage to her vision, just her peripheral, but her vision is 20/25, not 20/800 anymore. Her pituitary gland no longer works, and she will be on medication for the rest of her life because for this, but she is here, and we feel very blessed!! In April 2020, she will be considered cured. Our family wants to find a cure for all brain tumors to give everyone the many blessings our daughter has received during this journey and we will always be a part of the brain tumor walk no matter where we live!!