A family friend contacted the organizers of beHeadStrong on our behalf when our then 4 year-old daughter, Sarah, was diagnosed with a brain tumor. Gail Mullin of the beHeadStrong Organization called us directly and offered her support in our efforts to find the best neurosurgeon and medical care available for our daughter’s brain tumor. Most of all, she shared with us her personal story of having a loved one diagnosed with a brain tumor and the trials and challenges that we may need to face and overcome.

As a parent, it is hard to accept, much less understand, the intricacies and related health issues associated with the treatment and care of a child with a brain tumor. It is nearly impossible to understand or research everything you need to know about brain tumors to make confident and timely medical decisions for your child. Especially when fear and the anxiety of the unknown are hanging overhead. Beheadstrong was there to help us navigate through our emotions and focus on finding the right neurosurgeon and medical care for Sarah, no matter where our journey would take us.

BeheadStrong provided our family with Target Gift cards to help ease the financial burden of brain surgery performed in another state, a medical contact who specialized in the surgical removal and treatment of brain tumors, recommendations for soliciting second opinions, and much needed literature to educate our family how to care for a loved one with a brain tumor.  It’s hard to imagine what families like ours would do when faced with making such critical decisions without the guidance, support, and direction from organizations like beHeadStrong. My family and I are deeply grateful for the attention and kindness that the beHeadStrong Organization provided to us at a very emotional and life-changing event in our lives. Thank you.

Sarah B.’s Story

Sarah B. was diagnosed with a brain tumor on October 28, 2008. She underwent surgery in Memphis, TN in November 2008 and began chemotherapy in January 2009 for an infiltrative glioneuronal neoplasm aka, a ganglioglioma. She is a vibrant, joyful, playful child who makes you feel like you are the most important person in the world. She continues to shine her love everywhere she goes.  This is her story.

In September 2007, Sarah began having symptoms of reflux/nausea that would occur at varying hours during the day. These symptoms appeared once to six times a day, or she would go a few days without any episodes. Sarah would clasp her hands over her mouth as if she were experiencing indigestion or gas, her heart would race, she would feel like she was about to vomit but would never get sick, and sometimes she would exhibit strange hiccup sounds.  No matter what, these episodes never interfered with Sarah’s appetite or ability to run and play with her friends.

Sarah was taken to her pediatrician about these episodes and after a few months she saw a Gastroenterologist to verify whether or not she had a food allergy or some digestive problem. The Gastroenterologist couldn't figure out what would make her feel this way and suggested that it was a trained response to reflux that she developed. The Doctor recommended trying to retrain her to respond differently to the feeling of nausea. However, these episodes continued and began to change slightly.

Sarah began hiding from the family when she felt nauseaous and she developed odd sleeping patterns. Looking back at each of these symptoms now, we can see a pattern.

It wasn't until August 2008 when we discovered these episodes were more than simple tummy aches. During breakfast, Sarah was talking away about her pancakes and everything else she had on her mind when a look come over her face, her mouth twitched to one side like a side-smile and her eyes began to track something moving in the room while her head remained perfectly still.  Sarah remained unresponsive for only a handful of seconds. Then she snapped out of her daydream, picked up the conversation where she had left off, and said that she was tired and needed to go back to bed. Sarah had another similar episode at the beach and again at breakfast another morning.

Our pediatrician recommended an EEG and referred Sarah to a Neurologist at Kansas City Children's Mercy Hospital. In September 2008, an EEG showed no abnormalities and the neurologist recommended a MRI as the next step. But at that point, Sarah stopped showing any symptoms of nausea of any kind for almost 2 weeks.

Sarah continued to show no signs of nausea for the eight weeks prior to her MRI on October 28, 2008.  Although no symptoms were present, the Radiologist identified a mass on her brain that required Sarah to be admitted at Children’s Mercy Hospital for further testing under sedation. 

Sarah's brain tumor was complex and located deep in the left temporal lobe which controls speech, memory and the right side of the body. Parts of the tumor share blood vessels with her brain stem and nerves that transmit images from the eyes. Since Sarah was in good health when she was diagnosed, we took some time to figure out what to do and where to go. 

The next several days were spent frantically calling and researching pediatric neurosurgeons all over the country. We decided to have Sarah's surgery performed by a highly respected Neurosurgeon in Memphis, TN in connection with St. Jude Children's Research Hospital. We are very thankful that this doctor accepted Sarah's case. We knew that it would be impossible for anyone to remove the entire tumor, but nearly 90% of it was successfully resected.

Based on the pathology of Sarah’s tumor, she was accepted as a patient at St. Jude Children’s Research Hospital and is currently undergoing chemotherapy at both Kansas City Children’s Mercy Hospital and St. Jude.  So far, the remainder of Sarah’s tumor is responding to chemotherapy and it continues to remain stable with no signs of growth.