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Jan 23, 2016 Latest post:
Aug 9, 2018
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most. Here's the updated high-level parts of the "Anne-marie Brain Tumor Survival Plan" (AKA Strategic or Battle Plan):
ANNE-MARIE'S MISSION: Have a 100% probability of surviving to at least 80 years old, with complete and permanent eradication of the tumor, while preserving brain tissue and functionality.
ANNE-MARIE'S VISION: I am an outlier; meaning, my survival will be outside the normal statistics seen for this type of tumor. I will defy the odds, with the help of my team (YOU), and will live a full and productive life.
GOAL 1: Maintain my physical, mental and emotional health
GOAL 2: Reprioritize my life to support Goal 1
GOAL 3: Execute an organized and successful move to support Goal 2
GOAL 4: Inspire others
3-10-2016: UPDATE ON WHAT'S GOING ON From Anne-marie: Hi, everyone! It's been a bit crazy around here, as this brain tumor in my head is shutting me down and rendering me somewhat helpless. I am SO blessed and thankful for the army of friends and family who are on my team, helping me deal with this dramatic shift to save my life. YOU ARE AWESOME! This it THE place to come to find out what's going on and to volunteer to help. Feel free to share this link with folks. The more people praying, the better my chances of surviving!
ABOUT THE TUMOR. I have a glioblastoma wrapped around primary blood vessels and nerves at the brain stem (the base, right in the middle). It threatens to shut down my entire body (motor skills, digestion, all senses, and yes, even the important stuff like breathing and heart beat.) TREATMENT MUST START ASAP-hours are even making a differerence at this point.
CURRENT TREATMENT PLAN: as of 3-3_2016:
1) Walter Reed National Military Medical Center neurusurgery and neuro oncology tean watching over me like a hawk.
2) Brain marker/navigation. I will be covered with stickers on my head to retain a mapping of the brain to guide Dr Meryl Seeverson (tumor removal) and Doc George (bleeding comtrol)
Will work with my hair care team (Kim Newman and Desiree Melnychenko-surprise!) regarding shaving my hair and scalp management. Des, I would like to use your wig, and I will NOT dye it blue!
Doc Theeler is recommending approval of the Optiva porcelain cap for my tumor type.
I will have to have a smooth scalp with NO hair to improve conductivity.
3) Biopsy to confirm the tumor's nature (malignent ). Doc Seeverson used the biopsy hole to remove the tumor, and there is a metal plate.under the scalp. Not sure how this will impact use of the Optiva device, as you can not have a metal plate when using the Optiva hat
4) Radiation (6 weeks, daily) and chemotherapy (6 months, 2 weeks/month-daily), starting 1-3 days after surgery. my radiation onchologist (Doc Skinner) and medical (chemo) oncologists( Doc Thessler) are the best! I understand the radiation oncologist'sand technicians skills are VERY important
Chemo is currently planned to be oral so I can stay at Fisher House (out-patient) but medical onchologist will make the call.