Samantha’s Story: Realistic and Optimistic

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.     

By Ellen Eggenberger

One fine March day in 2003, my 10 year old daughter’s life changed. Before this day, she was athletic, bright, sunshiny and just in the prime of her childhood. On this day, she was diagnosed with a benign cyst in her brain, but it is also called a tumor.
The pathologist and neurosurgeon were not in agreement about what it was. Benign brain tumors are “malignant by location.”  There’s not a lot of room in there. Due to hydrocephalus, multiple hormone failures, meningitis and 45 surgeries, including a craniotomy to remove the tumor, she is now completely disabled. She has been in pain, 24/7, for the last eleven years.
It wears on a person.

There was one point in “our” (I say that selfishly) journey that Samantha was grateful for her illness. She got presents, got to meet some famous people, and met some amazing brain tumor families at a place called Camp Sunshine in Maine. We shaved with the 46 Mommas and were on the SU2C show in 2010.

Finally, we were with people who understood. She had kids she could talk to. They invented texting! She talked to her friends whenever she wanted. We went into debt, over and over again, to visit these friends. I did anything I could to make her feel better. Camp saved us.

September Samantha2

School was a struggle. I always pushed her to go. Looking back on it, that was my wanting her to be “normal.”  There was always a lot of pressure from school as well. We got reported to the truant officer at one point. She loved going to school and pushed herself as well, but she just couldn’t do it. When she entered high school, we ended up moving to a district that could work with us. In what would have been her senior year, she took her GED and did amazingly well.

She is my hero.

Her typical day is spent on a computer. She can’t concentrate enough to read books anymore. She was an amazing writer. Her cognitive skills have deteriorated to the point that she can’t write. This has devastated her. Her love of life is gone. She has good moments, but they are farther and farther apart.

I can’t describe how difficult it is to watch your child disappear in front of you, while she is sitting next to you. Years ago, during a particularly bad period of shunt revisions, she said to me, “Mom you be optimistic, I’ll be realistic.”

Samantha, I love you so much.

I will be optimistic that someday something will help you.  I will be optimistic that you can get your life back.  I will be optimistic that we can figure out how a brain tumor that exploded in your brain eleven years ago and could do so much damage is still something that can be fixed.

Someday our realistic and optimistic will be the same. I just know it.

September Samantha1

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