Rachel Lilly

Prior to my surgery I was a very active, independent 25 year old. I had moved from Springfield, MO in January of 2014, after graduating from MSU with a Bachelor of Science degree in Wildlife Biology. I was living with my boyfriend, Stephen, and working as a server at a great Shushi bar called The Drunken Fish. I enjoy playing volleyball and was competing on a sand volleyball team. I also enjoy gardening, beadwork, crafts and decorating. I love spending time with family and friends especially my twin sister Amanda, Stephen and my 6 year old Boxer “Mellow.” I thoroughly love the St. Louis Cardinals and going to Busch Stadium to watch them play! I was loving life!

In mid-October of 2014, I started having headaches which were becoming progressively worse. On November 22, 2014 I was doing yoga with a friend and started having a very bad headache. I thought I was just dehydrated or something, so my friend and I went to get something to eat. I threw up and my vision got blurred. This was a red flag. I called my Mom and she told me to get to the emergency room. Stephen rushed me to the ER at Barnes Jewish. I had a CT scan of my head and it showed that I had hydrocephalus real bad. I was admitted to the NNICU. There I got my first ever MRI, and they found a tumor against my brain stem. It was blocking my 4th ventricle, keeping my cerebral spinal fluid from draining and creating pressure in my skull. That’s what was causing my headaches. On November 24, 2014 I had my surgery, 2 days after I went to the emergency room.
They removed a tumor about the size of a golf ball. It was a benign tumor called a Pilocytic Astrocytoma Grade 1. I spent 16 days in the NNICU, 10 days in the step down unit and 6 weeks in the Rehabilitation Institute of St Louis.

I am currently living with my Mom and Dad while I recover. I suffer from what’s called Dorsal Midbrain Syndrome, which causes me to have double vision. I also have moderate hearing loss as well as some right sided weakness, some trouble with my balance and some tremors in my right hand.

My recovery is slow, but I continue to work hard at my therapy. I have very good doctors. I am very thankful for the constant love and support shown to me by my family and friends. I am also thankful for my new friends in the support group, especially Michael.

3 thoughts on “Rachel Lilly

    • What a strong, brave woman you are. You have shown others that big things can be overcome. Keep up your positive thinking and never stop fighting for your goals. I grew up with your Mom and I know you have lots of love behind you there. I wish for you a smooth recovery and much peace for you, your boyfriend and the rest of your family. Keep us abreast of your progress. We all are behind you and support you during this journey! You can do this!!!

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