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Tiahna is my adorable 10 year old neice and is my inspiration to fundraise for the National Brain Tumor Soceity. You would never know looking at her but she has been living with a brain tumor for most of her life. Her story is AMAZING and goes to show that we CAN overcome the odds that are put before us with the love of family and faith in God. Here is her story...
Tiahna was diagnosed with a craniopharyngioma just before her 2nd birthday. A craniopharyngioma is a rare, benign cystic type tumor that usually stems from the pituitary stalk. It is a slow growing tumor, but because of it’s location in the brain, it can cause life altering/threatening complications such as blindness, hormone dysfunction, growth retardation, and mental alterations, to name a few.
Tiahna had her first surgery in June of 2000 just two weeks after the initial diagnosis. We subsequently learned with a repeat MRI that she also had an AVM (arterial-venous malformation) in the upper right portion of her brain. The surgery was done in Little Rock Arkansas at the Arkansas Children’s Hospital. The tumor was removed and we went home after about a week.
In Dec. of 2000 we returned to Little Rock to have the AVM repaired and a month later- during a follow up MRI- they discovered that the tumor had grown for a second time. Just three months after her second brain surgery, Tiahna was back at the hospital for the second attempt to remove the tumor. At that point, the doctors decided to remove the pituitary gland and stalk to ensure that the tumor would not grow again. We thought we had it beat.
About 6 weeks after her third surgery we learned that once again, the tumor had grown back. Because Tiahna had had three complicated brain surgeries within 9 months the doctors felt it was too risky to try surgery again. They decided to treat the tumor with Gamma Knife radiation. The intention with the Gamma Knife was to destroy the tumor cells and eventually dissolve the tumor. It turned out good and bad. Although the tumor was never destroyed, it did stop growing. We were grateful for that.
Due to the complications from the tumor and the attempts to remove as much of the tumor as possible, Tiahna suffered several complications. She has lost all of the vision in her left eye and approximately 20% of it in the right as well. She is on multiple hormone replacement therapies (thyroid, growth, and adrenal hormones) and has since been diagnosed with epilepsy as a result of the trauma to her brain. Despite all of these hurdles, Tiahna has lived life to the fullest. She is a happy, smart, and beautiful straight A student that just started her 5th grade year. You would never know by looking at her that she ever had such serious health problems.
Unfortunately, we found out in August of 2008 that the tumor has once again begun to grow. Tiahna will soon face her 4th surgery to attempt to remove this tumor. With so many unknowns it is obviously a frightening time for her and her family. We put our faith in God and the doctors and nurses to take care of her and get her past another hurdle. She is a fighter and we have faith that she will overcome it once again!
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Thanks again for supporting my fundraising efforts and helping to make a difference in the fight against brain tumors! Don't forget to forward this to anyone who you think might want to donate too!
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