April 2012
- LRG mourns the loss of a great friend, Jeroen Pit
- GDOL Update: Speakers announced
- LRG Research Team meets in Leuven, Belgium: leaves with renewed energy & commitment to finding the cure for GIST
- Meet our new Montana local rep: Dirk Niebaum
- Cellular origin of GIST from the “good” cells’ perspective
- Alianza GIST meets in Miami
- And they’re off! 1st ‘Harness a Cure’ is a success
- NJ GIST gathering serves up support & smoothies
- NoCal GISTers meet!
- New report finds most hospital errors go unreported
- Happy Cancerversary to Brenda Bannon!
- Thomas G. Overley, 1952-2012: Toledo lawyer played guitar, sang in group
- Durham lived life with passion and pride
- Did You Hear? Did You Know?
- Arizona GISTers meet!
- Spunky Texan fought GIST bravely
- Calendar
Archive
March 2009
Eleven year-old battles GIST with brave face for six years
Brittany is a five and a half year GIST survivor. At the age of five, Brittany became anemic due to internal bleeding that was caused by an ulcerated tumor in her stomach. She was admitted to The Hospital for Sick Children where she underwent a ten hour surgery to remove the tumors. During this surgery, they removed 75 percent of her stomach and reworked the layout of her gastrointestinal track.
Over two years later, when Brittany was seven years old, the disease recurred, this time in her liver. The course of action at that time was to use a drug called Gleevec to control or shrink the tumor. Though this drug has been used with success in adult GISTs, it failed to help Brittany.
A few months later Brittany had her second surgery to remove the tumor from her liver and during that surgery theyfound three more tumors in her stomach. They were successful in removing the four tumors after 12 hours in the operating room, but this left her with two ounces of stomach.
We continued to work with The Hospital for Sick Kids to monitor her for any redevelopment of the disease. We thought the disease had gone away as Brittany looked and acted healthier than we had ever seen her.
Unfortunately, a scan in February 2008 revealed the disease had reoccurred again. There were a total of three tumors, which were removed from her remaining stomach in a six hour surgery on May 23, 2008.
The doctors were concerned that she would lose the remaining portion of her stomach. The good news is that her stomach had stretched enough from the second surgery and they were able to keep one and a half ounces of capacity. So her battle continues to ensure she is eating enough to sustain growth.
The disease is relentless. In August 2008, a follow-up scan discovered the disease had returned once again.
Brittany got in a first stage clinical trial, taking a drug called Sutent. We were optimistic this drug would help.
She has now been switched over to a newer treatment, presently referred to as IGF1R. It is an insulin base growth hormone receptor that might deal with the disease more effectively. Brittany seems to be on the leading edge of new treatments as she is the first and only pediatric GIST Patient on IGF1R.
Our daughter Brittany is an amazing person who has been fighting battle after battle and continues to win. We as parents couldn’t be more proud of her bravery and her courage through everything she has faced and continues to face.
Wednesday 28 March, 2012
ALN
Wednesday 28 March, 2012
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Saturday 4 February, 2012
Just joined this forum today.
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Thursday 2 February, 2012
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All the very best!
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Monday 30 January, 2012
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Sunday 29 January, 2012
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Friday 27 January, 2012
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Sunday 22 January, 2012
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Tuesday 17 January, 2012
Though it would be nice to wish you all a happy healthy and prosperous 2012!
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-Kathy Miller
Thursday 19 March, 2009
G-P KEN XO
Thursday 12 March, 2009
I think about her most days and say a little prayer now and again for her her Grandma will keep me posted about her progress.
God Bless you all
Saturday 7 March, 2009
We pray that this new treatment is the answer for your precious daughter. God Bless you all.
Thank you for sharing your story.
Saturday 7 March, 2009
Friday 6 March, 2009
I wonder if you know how important the information you are giving to the doctors and researchers is, being the first and only one on IGF-1R. I wonder if you know what a remarkable and wonderful young woman you are. I wish I could reach through cyberspace and hug you.
And Brittany's mom and dad - I am awestruck at the strength and perserverance you exhibit, being in the most difficult position of any of us on the GIST battlefield - watching your baby fight and not being able to take her place or shield her from the battlescars. You are all my heroes. God's abundant blessings on you all. Blessings, Brenda
Thursday 5 March, 2009
Thank you for sharing this inspiring story with us. Your daughter Brittany is truly courageous and she and your family with be in our prayers.
God Bless you all and may his grace guide you and support you at this very difficult time.