Help Chana's Search4 ChordomaCure
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CHORDOMA. ANYONE could be born with it, have it lay dormant, and often die with it and never know they had it. It is a medical diagnosis so rare, that there are only about 300 cases found each year in the U.S. By the time symptoms start occurring, it is difficult to treat, generally not with chemo, but almost always with surgical precision, radiation, proton beam treatment or gamma knife.
Chana Gail Willis refers to the 8mm mass inside a bone in the middle of her head as "the little Beast." Hers was found in late 2003, after giving birth to her last child, in a routine exam before carpal tunnel wrist surgery. The medical professionals didn't even classify it as cancer back then. They called it an unknown 8mm mass ... in the center of a bone literally in the middle of her head, the bone that starts the spine that the brain sits on. Because obtaining biopsy tissue is so difficult because of the remote location under the brain in the center of the head, the first and immediate course of treatment is generally surgical removal. Chana opted to wait until symptoms appeared. The official Dx was "Incidental innerosseous clival chordoma."
With the advent of social media and the growing internet, more doctors are able to find each other over the last ten years and patients find they are not alone in their chordoma warrior journey. There's a couple of times a year where doctors, researchers and patients get together to share new and emerging treatments or neurosurgical techniques in the search for a cure.
The University of Texas M.D. Anderson Cancer Center, and Massachusetts General Hospital - Stephan L. Harris Center for Chordoma Care, have one of the few U.S. and less than a dozen specialized centers in the world dedicated to the rare bone tumor.MGH describes a chordoma as ...
"Chordoma is a rare malignant bone tumor. A group of cells known as the notochord come together during the fourth through six weeks of fetal development. The notochord serves as the base for the development of the spinal cord. As the spinal cord forms, the notochord disappears, except for parts that form part of the discs between the vertebrae. Chordomas form from parts of the notochord that don’t break down as they should. Over time these leftover cells can change and become malignant. Harris Center researchers are studying these changes to develop new therapies for chordoma. Chordoma primarily spreads by local invasion, but it does have the potential to spread to the lungs, bone and liver."
Chana Gail followed the prescribed course of MRIs and CTs every 3 months for several years, and then 6 months for a few years and the once a year for a few years. Because the "mass" did not change or grow, the military Tricare system advised her to withdraw from the managed case specialized care system and just follow up periodically in the future with comparative xray scans.
Chana Gail found the Chordoma Foundation . org website, and soon found others like herself, with this rare diagnosis, from toddlers to moms, newlyweds to middle aged folks. Remaining quiet about the lurking battle with her friends and family, she started reading and researching and putting faces and following life stories, and battles and treatments of others and comments by the doctors seeking treatments. Then Zoe died. She read about 7 year old Jared and 3 year old Anna. She read about how Allison lost her long battle.
This year, in 2015, Chana Gail decided she could no longer sit idly by, buying time with the occasional scan. Perhaps there was something unique in her DNA, her diet, her lifestyle, that would provide researchers and doctors need info in their quest for hope for a cure, or minimizing the growth and treatment. The medical field knows what causes the tumor, they just have not nailed down what triggers it to grow, and grow rapidly and invasively.
Chana Gail is working with her insurance to update her scans; insurance will not cover everything. There's a conference in New York in June, and she would like to attend to visit with the doctors, neurologists, neurosurgeons, ENTs, researchers, and host of other doctors and patients sharing information and treatment options. It is an important in information-sharing and collaboration for making quicker progress in the treatment of chordoma and other cancers. The information she will share, and any tissue or medical records, she hopes to help the professionals. It will also help her establish some contacts for future surgery if the option is chosen to remove the mass from the bone in her head.
Willis stated, "I feel I have a responsibility to become a Chordoma warrior and uncommon long term survivor. There are those warriors who have lost their battle, and perhaps by me getting more involved, it may help find a cure some day. And it may help me personally in treatment options if I choose to have surgery to remove the beast."
Willis concluded, "I've still got a lot of living to do, and enjoy giving so much back to my community, family and civic clubs. My time is not done, and it's a hard thing to ask for this funding, but it is not entirely for myself. It's for my future and the future of others who face this uncommon diagnosis. I'm not dead yet, and maybe them finding my chordoma on accident will help them find a cure."
The financial goal for the funding is to cover the trip to the Chordoma Foundation June 2015 conference. The total was computed for the air fare, hotel, shuttles, food, mileage to get to the airport, and what is not covered by insurance to update her past due scans. Willis stated that anything in excess of the goal for this event will be donated to the Chordoma Foundation for research and tissue bank.
Chana Gail Willis is married to David "Tex" Willis, and together they have 3 children, Audrey 25, Dalton 20, and Bobby 12. She is a member of the Winnsboro Area Rotary Club, Kiwanis Club, the Autumn Trails A's and Dallas Ford Model A Club, and is a writer, publicist and business consultant. She has previously served on the Whitewright Volunteer Fire Dept. and the Texas Army National Guard - Family Readiness Group volunteer services, and is a recipient of the Texas Governor's Yellow Rose award. A graduate of Texas Tech University, she also attended Abilene Christian University and Eastfield Community College in Dallas. Her family can trace their roots back to Switzerland in 1743, and coming to Texas in the early 1840s. Willis added, "I'm a Navy kid, and a military spouse with my hubby now retired; we are trained to be strong and fight for a good cause. I cannot be quiet any longer. I must and fight this uncommon thing, and stand I will."
Willis concluded, "I have a long family legacy. My dad lived to 91. God's not done with me yet, and I want to make a difference and help the Chordoma research in any way I can. Please help me with this cause. Thank you."
Chana Gail Willis refers to the 8mm mass inside a bone in the middle of her head as "the little Beast." Hers was found in late 2003, after giving birth to her last child, in a routine exam before carpal tunnel wrist surgery. The medical professionals didn't even classify it as cancer back then. They called it an unknown 8mm mass ... in the center of a bone literally in the middle of her head, the bone that starts the spine that the brain sits on. Because obtaining biopsy tissue is so difficult because of the remote location under the brain in the center of the head, the first and immediate course of treatment is generally surgical removal. Chana opted to wait until symptoms appeared. The official Dx was "Incidental innerosseous clival chordoma."
With the advent of social media and the growing internet, more doctors are able to find each other over the last ten years and patients find they are not alone in their chordoma warrior journey. There's a couple of times a year where doctors, researchers and patients get together to share new and emerging treatments or neurosurgical techniques in the search for a cure.
The University of Texas M.D. Anderson Cancer Center, and Massachusetts General Hospital - Stephan L. Harris Center for Chordoma Care, have one of the few U.S. and less than a dozen specialized centers in the world dedicated to the rare bone tumor.MGH describes a chordoma as ...
"Chordoma is a rare malignant bone tumor. A group of cells known as the notochord come together during the fourth through six weeks of fetal development. The notochord serves as the base for the development of the spinal cord. As the spinal cord forms, the notochord disappears, except for parts that form part of the discs between the vertebrae. Chordomas form from parts of the notochord that don’t break down as they should. Over time these leftover cells can change and become malignant. Harris Center researchers are studying these changes to develop new therapies for chordoma. Chordoma primarily spreads by local invasion, but it does have the potential to spread to the lungs, bone and liver."
Chana Gail followed the prescribed course of MRIs and CTs every 3 months for several years, and then 6 months for a few years and the once a year for a few years. Because the "mass" did not change or grow, the military Tricare system advised her to withdraw from the managed case specialized care system and just follow up periodically in the future with comparative xray scans.
Chana Gail found the Chordoma Foundation . org website, and soon found others like herself, with this rare diagnosis, from toddlers to moms, newlyweds to middle aged folks. Remaining quiet about the lurking battle with her friends and family, she started reading and researching and putting faces and following life stories, and battles and treatments of others and comments by the doctors seeking treatments. Then Zoe died. She read about 7 year old Jared and 3 year old Anna. She read about how Allison lost her long battle.
This year, in 2015, Chana Gail decided she could no longer sit idly by, buying time with the occasional scan. Perhaps there was something unique in her DNA, her diet, her lifestyle, that would provide researchers and doctors need info in their quest for hope for a cure, or minimizing the growth and treatment. The medical field knows what causes the tumor, they just have not nailed down what triggers it to grow, and grow rapidly and invasively.
Chana Gail is working with her insurance to update her scans; insurance will not cover everything. There's a conference in New York in June, and she would like to attend to visit with the doctors, neurologists, neurosurgeons, ENTs, researchers, and host of other doctors and patients sharing information and treatment options. It is an important in information-sharing and collaboration for making quicker progress in the treatment of chordoma and other cancers. The information she will share, and any tissue or medical records, she hopes to help the professionals. It will also help her establish some contacts for future surgery if the option is chosen to remove the mass from the bone in her head.
Willis stated, "I feel I have a responsibility to become a Chordoma warrior and uncommon long term survivor. There are those warriors who have lost their battle, and perhaps by me getting more involved, it may help find a cure some day. And it may help me personally in treatment options if I choose to have surgery to remove the beast."
Willis concluded, "I've still got a lot of living to do, and enjoy giving so much back to my community, family and civic clubs. My time is not done, and it's a hard thing to ask for this funding, but it is not entirely for myself. It's for my future and the future of others who face this uncommon diagnosis. I'm not dead yet, and maybe them finding my chordoma on accident will help them find a cure."
The financial goal for the funding is to cover the trip to the Chordoma Foundation June 2015 conference. The total was computed for the air fare, hotel, shuttles, food, mileage to get to the airport, and what is not covered by insurance to update her past due scans. Willis stated that anything in excess of the goal for this event will be donated to the Chordoma Foundation for research and tissue bank.
Chana Gail Willis is married to David "Tex" Willis, and together they have 3 children, Audrey 25, Dalton 20, and Bobby 12. She is a member of the Winnsboro Area Rotary Club, Kiwanis Club, the Autumn Trails A's and Dallas Ford Model A Club, and is a writer, publicist and business consultant. She has previously served on the Whitewright Volunteer Fire Dept. and the Texas Army National Guard - Family Readiness Group volunteer services, and is a recipient of the Texas Governor's Yellow Rose award. A graduate of Texas Tech University, she also attended Abilene Christian University and Eastfield Community College in Dallas. Her family can trace their roots back to Switzerland in 1743, and coming to Texas in the early 1840s. Willis added, "I'm a Navy kid, and a military spouse with my hubby now retired; we are trained to be strong and fight for a good cause. I cannot be quiet any longer. I must and fight this uncommon thing, and stand I will."
Willis concluded, "I have a long family legacy. My dad lived to 91. God's not done with me yet, and I want to make a difference and help the Chordoma research in any way I can. Please help me with this cause. Thank you."
Organizer
Chana Gail Willis
Organizer
Winnsboro, TX