posted by btfc: Tuesday, February 19, 2008
Welcome to the newly launched BTFC Blog spot-we hope you will join our community of supporters and share your thoughts, triumphs, questions or concerns with other cancer patients, relatives and friends, survivors, volunteers, and information-seekers.
To post a question or comment of your own, you must Sign in first using a Google or Blogger account. If you need additional information, please contact the BTFC at 704.821.0110 or braintumorfund@carolina.rr.com
Thank you for setting this up, Traci!
To give a quick update on me, I just started a Phase I clinical trial for Enzastaurin(LY) and Carboplatin through the NIH. LY is a antiangiogenesis drug similar to Avastin and is currently in the FDA approval process. Courtney and I flew up to the NIH yesterday where I got my loading dose of LY. I have to go back to Bethesda middle of next week to get my loading dose of Carboplatin and LOTS of bloodwork.
This blog is a great idea! I am hoping this will create a lot of ideas about new treatments, fundraisers, etc.
- Bobby Ketchie
February 22, 2008 7:22 PM
Wow, I wish this had existed when my mom was fighting brain cancer. She's been gone now for almost 6 years, she passed 12/13/02, but she's still with me every day.
It was a couple of weeks before my son's first birthday, 2/23/01, that mom was rushed to the ER with what we thought was a TIA - she was only 52 years old. Turns out it was a Stage 4 Glioblastoma Multiformae. Needless to say we were devestated when the neurosurgeon said the prognosis was 9-12 months, but it didn't stop mom from putting up a fight. The primary tumor was sitting right between the sensory and motor cortexes so surgery had to be somewhat conservative so as to not leave her motionless and/or speechless. She bouced back after the first surgery like a champ!!
We went for several months with excellent check-ups, but a second surgery was necessary. Again she bounced back but this time had lost more speech and motor skills, but still loving life.
All of us, by this time, had pretty much reserved that this cancer was going to win at some point, but weren't ready to give up yet. We planned a trip for our entire family (13 of us!) - a Disney cruise, at mom's insistence! Unfortunately, a couple of days before we were to leave for the cruise, mom fell ill and was rushed to the ER again. I stayed with her for 36 hours straight, making sure she had a voice in the very loud and hectic Emergency ward. The MRI showed the cancer was back with a vengence and she would not be able to take the trip - but she insisted the rest of us go. My brother and I resisted, quite dramatically!, but mom and dad won in the end. Dad stayed with mom while the rest of our crew went on the cruise.
We came home with pictures, souviners and stories to share, but mom was slipping away. The chemo she was on, coupled with the pressure of the tumor, had left her with only two words (both of which now have meaning beyond the usual for us), and couldn't do much for herself. We showed her the pictures and told the stories anyway, and she bounced back a little.
Mom's decision was to go home and have hospice tend to her there. It was great to have her home. Soon her pain was too hard to manage so we made the move to the Hospice home - a wonderful, loving place filled with angels. Mom stayed there for 2 months (much longer than anyone expected!), then God decided it was time for her to come home to him.
Her strength, perseverance and love were truly awesome, and serve as daily inspiration to me still. Although I lost my mom, my best friend, I thank God every day for giving me 30 wonderful years with her.
And that's the moral of my story - no matter how long the words are that the doctors use, and no matter how hard any one day may be, be thankful for every day, every moment with your loved one. Even in adversity, their love shines through; and in spite of adversity, it often shines even brighter. Don't dwell on what could have been - be thankful, every moment, for what you have been given.
May 19, 2008 10:59 AM
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