Saturday, May 26, 2012

Truly Inspiring - BUTTERFLY BLOG for the Brain Tumor Foundation ...

Savannah was diagnosed with brain cancer on August 14, 2006, but that is not where her story begins. In March 2005 she was diagnosed with Diabetes Insipidus (DI); a disorder caused by the brain not sending signals to the pituitary gland for a hormone to be released to absorb excess water from the kidneys. One of the causes of DI is a brain tumor, so Savannah had a MRI in March 2005. No tumor was detected. She began taking the needed hormone by mouth twice a day and saw an endocrinologist regularly.

Toward the end of 2nd grade Savannah started complaining of headaches. In June 2006 she had her 8-year-old checkup and she failed the eye exam; we thought that explained the headaches. We made an appointment with an eye doctor for the end of July and went on about our summer. When Savannah?s eyes were examined on July 31, 2006 no problems were detected. Savannah was not acting like herself; she was sleeping a lot and moody. I called her pediatrician and we discussed doing another MRI. From that MRI her tumor was found. We were sent to Atlanta on August 4, 2006, but once we got there found out our insurance was not accepted. An appointment was made to go to Shands in Gainesville, FL, but the pediatric neurosurgeon was on vacation until August 14 ? so we waited. We thought her tumor was benign at this point, due to the location and how it ?looked? on the MRI. Toward the end of the week of waiting Savannah started to deteriorate; she was vomiting, sleeping much of the time and losing her eyesight.

We got to Shands on August 13, 2006 and went to the ER. They did blood work and another MRI on August 14. The blood work showed Savannah had cancer. She had a mixed germ cell brain tumor near her pituitary. She received six rounds of chemo and then had brain surgery to try to remove what was left of the tumor. Unfortunately, the 1cm tumor that remained was not able to be removed, but the surgeon is fairly certain it is basically scar tissue. After Savannah healed from brain surgery she had six weeks of cranio-spinal proton radiation in Jacksonville, FL. Savannah was declared ?cancer free? when her treatment ended on March 13, 2007!

Although treatment for the cancer is over, childhood cancer survivors are far from ?out of the woods?. Childhood cancer survivors battle the rest of their lives. Chemo and radiation have long term effect ? a few are: cognitive loss, fertility issues and personality changes. These special survivors are at an increased risk for developing other cancers due to their treatments. Due to the location of Savannah?s tumor she has no pituitary function and must replace all hormones, including growth hormone shots she endures every night.

Savannah is now a bright, beautiful, fun-loving 13-year-old. She has yearly MRI?s and checkups with her oncologist and sees her endocrinologist every four months. Savannah is aware of how fortunate she is to be a survivor; she is our miracle!

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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. This entry was posted in Uncategorized. Bookmark the permalink.

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