Stories of Inspiration: Swimming, Movies, Driving…What Teen Life Should Be!

On April 14, 2008, Amber was diagnosed with a brain tumor in the brain stem.  From there we went to Shand’s at UF where we met with her neurosurgeon, Dr.Pincus.  Right away she had a biopsy on her tumor.  She was diagnosed with a ganglioglioma – a very rare, slow growing, low grade tumor.  On May 6, 2008 Amber had a subtotal resection of the tumor (STR).  Post-surgery she spent close to three weeks in the hospital because of compilations from the surgery.  On second day out of surgery her lung collapsed.  

In April 2009 we learned that the tumor was growing so Amber had to go on chemo.  How much did the tumor grow?  It was back to the same size it was before surgery, and now the tumor is inoperable. Amber started chemo on April 21, 2009.  The first chemo drugs Amber was put on were carboplatin and vincristine.  Six months later the chemo drugs were not working.  

October of 2009 Amber was put on a different chemo drug…Vinblastine.  Amber would get Vinblastine every week for six months, then every other week for an additional six months.  Vinblastine kept the tumor stable. Amber got off of vinblastine Oct of 2010. So far Amber’s tumor is stable.

We would have to travel from Lynn Haven, FL to Gainesville, FL for Amber’s chemo treatments and to see the doctors (it is 267 miles to Gainesville and 267 back home). We would get up at 6 in the morning to get to Gainesville to get her chemo…we would wait two to four hours for chemo and to see her doctors after chemo.  We would then get back in the car and drive 267 miles to get home.  Some chemo treatments Amber would be so sick, but never complain.

Now, Amber is at home enjoying being off of chemo, and she is doing wonderful! We will go back in three months to do a MRI.  If the tumor starts to grow she will go back on chemo.  Chemo just stops the growth of the tumor.

On April 14, 2011 we celebrated three years since Amber was diagnosed.  Amber is a happy 15 years old. Amber has been taking piano lessons for the last 5 years.  Amber spends lots of her time swimming and watching movies.  Mr. and Mrs. Smith is one of her favorite movies.   Amber is also working on her learner’s permit (driver license).


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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2 Responses to Stories of Inspiration: Swimming, Movies, Driving…What Teen Life Should Be!

  1. Hi there my 15 year old daughter was diagnosed with brain stem ganglioglioma 3 days ago. I ran into your story and it gives up hope. Wish I would contact you.

  2. Jason Hadfield says:

    Hello, I too have a daughter who is 3yrs old with a Brain Stem Ganglioglioma, she was diagnosed Dec 12/2012 and had partial resection of the Tumor Dec 18. We are about to start Chemo treatment and have been told the same chemo drugs will be given Vincristine and vinblastine. I hope and pray for your continued success.

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