From Linda Gene Goldstein
I am Micki Rae Shanoff’s mother and co-founder of this magnificent organization. I think it is important for anyone who has lost a beloved one to share a bit about their life. They are not just a name, but were once living, loving and laughing people, with loves, needs, wants and dreams of their own. Their lives deserve to be written about and recognized.
Once upon a time, on a magical Sunday morning (June 12, 1966) at 10:15, a beautiful, perfect, precious creature entered our lives. How lucky and honored I was to be her mother. Micki Rae added extra sunshine on that day and every day for the next 6 years.
Micki Rae was always the most popular child in school. She called everyone her “bestest friend.”
Our all-American girl never realized how wonderful or beautiful she was.
Micki Rae loved go-go boots, warm jammies, patent leather shoes, frilly dresses, sewing with my mother (her "Yammie Essie") and teaching her how to work “Cat in the Cradle," going to lunch with Daddy on Sundays, and anything that was purple. Of course she loved her dolls and two story doll house. She loved “Sesame Street,” “The Mary Tyler Moore Show,” “The Brady Bunch,” the Pickle Barrel, Hackneys, dolls (especially bridal dolls), “It’s a Small World” at Disneyland, ice skating, playing Candy Land, writing notes of love to her family, and crawling in bed with me on Friday nights (Daddy’s night out) with a pizza, to watch “The Odd Couple.” A huge Tom Jones fan, her favorite song was “Delilah”--or as she called it “Dewyla.”
Her favorite thing in the world, though, was a red “Bow Wow” her Daddy gave her. Bow Wow went everywhere with her. In fact, he is with her now.
One day in August of 1972, she didn’t feel well. She got into my bed and said she was seeing two of everything. Then I noticed one eye was turning in. I was so upset when the doctor said she had a lazy eye, I was going to get colored eye patches to match her outfits. Had I known what was yet to come, I would have realized that a lazy eye was no big deal.
The doctors did exploratory surgery and told us that Micki Rae had a glioblastoma mutliforme of the pons. They said she had four to six months to live. That’s when our descent into hell began. I shall not mention anything that happened to her during our four and a half months in the hospital.
She went into remission for two weeks. When we brought her home, she ran out to play with the neighborhood kids and didn’t even put her wig on. Micki Rae even went to first grade for a week. She was excited about being a “grader,” and she was always secure within herself.
Then, on a frigid, darker than usual January night (January 8th) at 8:00 pm, her normal bedtime, that beautiful creature left our lives.
I lived in the hospital with Micki Rae the whole time she was there. When I returned home, I received a call from Susan Kramer, whose daughter Stephanie was facing the same ordeal that Micki Rae had just been through. I don’t remember who put Susan and me in touch, but I thank whoever did. We decided to try to find a cure for this killer of children. As there was no organization devoted to only brain tumors, we started one. At the beginning, it was called the Micki Rae Shanoff Foundation for Brain Tumor Research.
I was the first president and stayed totally committed until my son, T.J. was born. Wanting to give him my full love and attention, I moved on and tried to put brain tumors behind me. But the organization has always been in my heart.
To see what it has grown to today is incredible.
It has taken me years to write this. Though I’ll never be at peace with Micki Rae’s death, T.J. has given me so much that I am able to finally lead a fulfilling life.
Thank you for reading this. I hope the American Brain Tumor Association can make your journey a bit easier.