Truly Inspiring: Sarah’s Story

It was a wonderful time in our lives.  My husband Kevin had returned home from a year in Iraq and was about to be promoted.  My sons – Chase and Wesley – were doing great and Sarah, our daughter, was a toddler full of personality.  Sarah was beautiful.  She had blue eyes and blond hair and she was funny.  I loved her personality.  She was simply great. 

In September 2007, we noticed Sarah was rapidly gaining weight.  We thought it was because we were eating poorly.  We changed our diet but a few weeks later I grew concerned enough to take her to our nurse practitioner.  She agreed that the weight gain seemed odd yet on the charts and compared to her brother’s charts at the same age, she was ok.  It was agreed to watch Sarah for a couple of weeks and bring her back for a follow up.  I never made that follow up appointment. 

One day my husband noticed that Sarah’s hand “looked funny”.  I agreed and made an appointment for her.  For the next few days, we continued our normal activities to include celebrating Sarah’s second birthday.  Over the course of these few days, Sarah lost use of her arm, her gait looked off, and she was drooling a little bit.  Being a holiday weekend, my husband took her to the ER.  They x-rayed her arm and concluded she was fine but to have her seen by her pediatrician.

At this point, I knew something was seriously wrong and had her seen on a same day appointment again with our nurse practitioner.  The nurse practitioner was concerned and felt Sarah should be seen by the head pediatrician.  When he finally saw her, he insisted her brothers had been rough with her and had pulled her elbow out of place.  I argued that that was not the problem and that I thought she had a brain tumor.  The doctor thought I was crazy since Sarah had not exhibited the classic signs of a brain tumor.   I argued back that she must have had a stroke then as her symptoms were all one sided.  I remember looking at him and saying, “Look at her face, it’s drooping, she’s drooling and her gait is off, not to mention she can’t use her arm!”  The doctor finally consented to run further tests all of which came back normal. 

Finally, he looked at me and said, “For your peace of mind, we’ll do a CT scan.”  As they were doing the CT scan, I saw it…a huge mass.  It was gut-wrenching. I can still see that moment in my mind as if it happened yesterday.  I didn’t say a word to my husband as we were waiting for the results.  He was still hopeful that everything was ok.  Finally, the doctor called us back and told us the news.  It was horrific to hear out loud.  We didn’t even have time to process it as we were immediately being sent to Kosair’s Children’s hospital in Louisville, KY.  While there, the news became worse.  The MRI revealed a deep tumor that could not be completely removed and it was surrounding the juncture where the major vessels in the brain meet.  At that moment, I knew Sarah was going to die from this.  No words can describe how bad this was for us.  We cried and cried.  To Kosair’s credit, they let all our family members, young and old, in to be with her. 

After much consultation, we made our way to St. Jude Children’s Research Hospital in Memphis, TN. Sarah had surgery, chemo, radiation, countless procedures and more chemo, but the tumor could not be stopped.  She was two and this was her life. 

After radiation, we moved from Ft. Knox to Ft. Benning, GA to be closer to family.  Egleston took Sarah as a patient and between St. Jude and Egleston, Sarah received the best medical care possible and from the most caring, loving staff possible.  We also took Sarah’s Make-A-Wish Trip to Animal Kingdom Lodge, Disney and the Barney show at Universal.  Sarah loved animals and Barney.

Sadly, the tumor spread throughout her central nervous system and she was put on hospice.  Sarah died November 13, 2008, a month after her third birthday.  Our youngest child and only daughter was gone to anaplastic astrocytoma-a cancerous brain tumor.  Her death almost destroyed us and certainly changed us forever.

Three and a half years she has been gone and she is missed every day. Even today, at times I still can’t believe she lost her life to a brain tumor.  She was so young and at the beginning of her life.  So much promise, so many dreams for her…all gone.  Sarah was a wonderful daughter, sister, granddaughter, niece, cousin and friend who is much loved and sorely missed.


About The Brain Tumor Foundation for Children

Founded in 1983, BTFC was the first nonprofit in the U.S. to focus on brain cancer in children. Our mission is to support patients and their families.
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