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Amber’s Story

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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 an biopsy on her tumor. The type of tumor Amber has is an ganglioglioma, a very rare, brain stem tumor. Amber's tumor is Wrapped around the nerves in the brain stem. Then on May 6, 2008, Amber had a STR (subtotal resection of the tumor). Amber then spent almost 3 weeks in the hospital, because of compilations of the surgery. Only because the second day out of surgery her lung collapsed. April of 09 the tumor was growing so Amber had to go on Chemo. How much do the tumor is back to the same size it was before surgery. Plus now the tumor is inoperable. Amber went on chemo April 21, 2009, the chemo drugs she is was on is Carboplatin and vincristine. Six months later the chemo durgs was not working. October of 2009 Amber was put on a different chemo durg...Vinblastine. Amber would get Vinblastine every week for 6 month then she got it every others week, she was on vinblastine for 12 months. Vinblastine keep the tumor stable. Amber got off of vinblastine Oct of 2010. So far Amber 's tumor is stable. Now, Amber is at home enjoying not being off of chemo, and she is doing wonderful!

We will go back in three month to do a MRI. If the tumor starts to grow she go back on chemo will do chemo. Chemo just stop the growth of the tumor.

One thing i want to add is Amber would have to travel for our apt in Lynn Haven,fl to Gainesville, fl to get her chemo and to see her drs. 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 2 to 4 hour for chemo and to see her drs. after she would get her chemo we would get back in the car and drive 267 miles to get home. Some chemo treatments Amber would be so sick but never complain.

Amber is now being treated at MD Anderson cancer center in Orlando, Fl.

Amber's tumor was tested for a mutation that is found in Melanoma (skin cancer). Amber's tumor tested position for the mutation. The name of the mutation is BRAF v600e.

Amber's tumor has been stable since October of 2010 and we pray that it never grow !

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