Julie's Jumbled Journey - 5th Brain Cancer Fight
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Our dear sister Julie is jousting through life in her 5th battle with extremely rare Clival Chordoma skull based brain cancer. Please read her jumbled journey and why after many years we urgently ask you to open your hearts.
Before Thanksgiving in 2002, while driving to pick up her young son and daughter from school, Julie suddenly started having double vision. In a panic, she called her husband. He picked up her and the kids and took her to an eye doctor. The eye doctor told her to go immediately to the hospital. She saw a neurologist and eventually a neurosurgeon the week of Thanksgiving. Before Christmas, on December 20th, Julie underwent major surgery to remove her 1st cancerous brain tumor. Afterward, in 2003, she underwent proton radiation treatment in another state living for three months far away from her two young children.
Clival tumors are so very rare. The annual incidence of any Chordoma-type cancer is approximately 1 in a million (with only 300 people diagnosed with Chordoma-type cancer each year in the U.S.), while her skull-based Clival Chordoma cancer accounts for only 125 of those cases per year.
Unfortunately, after only 4 years, Julie’s tumor had grown back. At that point, she underwent Gamma Knife radiation treatment. After that radiation, she lost her facial recognition ability. Then about 9 years later and after much anticipation that she had finally beat cancer, she, unfortunately, found out she was jinxed with the cancerous tumor growing back a 3rd time. This clival tumor was more invasive than before. In March 2017, Julie underwent her second brain surgery. The team of surgeons removed the 6th nerve of her eye which caused her eye to point inward. They also removed a nerve that caused her to lose balance and her ability to walk. She was admitted to a physical therapy hospital where they taught her how to walk again. She then underwent eye surgery to reposition her eye.
She donated her cancerous tumor tissue to the Chordoma Foundation for research for her type of cancer! She was so excited after the surgery that had she contributed to furthering research and possible cures in the future!
About 7 months after that second brain surgery, unfortunately, her cancer returned and the neurosurgeons did a more invasive third surgery which included the removal of the 5th cranial nerve that resulted in permanent numbness to the left side of her face and mouth. They also completely removed the left inner ear that resulted in complete and permanent hearing loss from that ear.
Just 3 months after her 3rd surgery in September 2018, Julie’s tumor had grown back for the 5th time. However, surgery and radiation were no longer options. She started flying regularly from her state to MD Anderson Treatment Center. After almost a year, as the tumor continued to grow, they were unable to place her in any clinical trials. After contacting the Chordoma Foundation, they helped her find a clinical trial at the UCLA Medical Center.
In July 2019, she began a Phase 2 clinical trial treatment program. While there is no cost for the experimental drugs, she is charged for all other medical costs, including all tests, doctor visits, MRI’s, etc., and this trial requires her to fly from her home state to the UCLA Medical Center every 4 weeks for 2 years. Each visit requires staying 2 to 4 nights at a hotel in a suburb of L.A. and a rental car. With the current COVID-19 situation, hotel and airplane flights are very critical and getting very expensive. None of the travel expenses and many of the medical fees are not covered by insurance nor the treatment program. They are all out-of-pocket costs! Since Julie is unable to work, due to her disabilities and the side effects of the drugs, she has incurred massive credit-card debt and unpaid medical bills. She is now only about halfway through her treatments with an entire year of medical and travel expenses still facing her. With the experimental drugs being her last option, if Julie were unable to travel for her treatments it would be life-threatening to her.
Quoting Carly Simon’s famous song, I can hear our Julie singing, "I Haven’t Got Time For The Pain."
Thank you for reading her story. We have tried to provide as much information about her situation as possible, but should you have any questions please reach out to us. The amount we have as a goal is to cover the costs she has incurred over the last year and to cover estimated future expenses. We are hoping and praying that at the end of her treatments, Julie’s cancer will remain in remission and she will go back to living life to the fullest once again. Any amount you donate will help her avoid severe hardship and provide a lifeline for her. She will be forever grateful for the blessing of your kindness.
Before Thanksgiving in 2002, while driving to pick up her young son and daughter from school, Julie suddenly started having double vision. In a panic, she called her husband. He picked up her and the kids and took her to an eye doctor. The eye doctor told her to go immediately to the hospital. She saw a neurologist and eventually a neurosurgeon the week of Thanksgiving. Before Christmas, on December 20th, Julie underwent major surgery to remove her 1st cancerous brain tumor. Afterward, in 2003, she underwent proton radiation treatment in another state living for three months far away from her two young children.
Clival tumors are so very rare. The annual incidence of any Chordoma-type cancer is approximately 1 in a million (with only 300 people diagnosed with Chordoma-type cancer each year in the U.S.), while her skull-based Clival Chordoma cancer accounts for only 125 of those cases per year.
Unfortunately, after only 4 years, Julie’s tumor had grown back. At that point, she underwent Gamma Knife radiation treatment. After that radiation, she lost her facial recognition ability. Then about 9 years later and after much anticipation that she had finally beat cancer, she, unfortunately, found out she was jinxed with the cancerous tumor growing back a 3rd time. This clival tumor was more invasive than before. In March 2017, Julie underwent her second brain surgery. The team of surgeons removed the 6th nerve of her eye which caused her eye to point inward. They also removed a nerve that caused her to lose balance and her ability to walk. She was admitted to a physical therapy hospital where they taught her how to walk again. She then underwent eye surgery to reposition her eye.
She donated her cancerous tumor tissue to the Chordoma Foundation for research for her type of cancer! She was so excited after the surgery that had she contributed to furthering research and possible cures in the future!
About 7 months after that second brain surgery, unfortunately, her cancer returned and the neurosurgeons did a more invasive third surgery which included the removal of the 5th cranial nerve that resulted in permanent numbness to the left side of her face and mouth. They also completely removed the left inner ear that resulted in complete and permanent hearing loss from that ear.
Just 3 months after her 3rd surgery in September 2018, Julie’s tumor had grown back for the 5th time. However, surgery and radiation were no longer options. She started flying regularly from her state to MD Anderson Treatment Center. After almost a year, as the tumor continued to grow, they were unable to place her in any clinical trials. After contacting the Chordoma Foundation, they helped her find a clinical trial at the UCLA Medical Center.
In July 2019, she began a Phase 2 clinical trial treatment program. While there is no cost for the experimental drugs, she is charged for all other medical costs, including all tests, doctor visits, MRI’s, etc., and this trial requires her to fly from her home state to the UCLA Medical Center every 4 weeks for 2 years. Each visit requires staying 2 to 4 nights at a hotel in a suburb of L.A. and a rental car. With the current COVID-19 situation, hotel and airplane flights are very critical and getting very expensive. None of the travel expenses and many of the medical fees are not covered by insurance nor the treatment program. They are all out-of-pocket costs! Since Julie is unable to work, due to her disabilities and the side effects of the drugs, she has incurred massive credit-card debt and unpaid medical bills. She is now only about halfway through her treatments with an entire year of medical and travel expenses still facing her. With the experimental drugs being her last option, if Julie were unable to travel for her treatments it would be life-threatening to her.
Quoting Carly Simon’s famous song, I can hear our Julie singing, "I Haven’t Got Time For The Pain."
Thank you for reading her story. We have tried to provide as much information about her situation as possible, but should you have any questions please reach out to us. The amount we have as a goal is to cover the costs she has incurred over the last year and to cover estimated future expenses. We are hoping and praying that at the end of her treatments, Julie’s cancer will remain in remission and she will go back to living life to the fullest once again. Any amount you donate will help her avoid severe hardship and provide a lifeline for her. She will be forever grateful for the blessing of your kindness.
Fundraising team: Julie's Team - No One Fights Alone (5)
Bryan Ginter
Organizer
Durango, CO
Julie Engelken
Team member
Virginia Ginter
Team member
Colleen Rogers
Team member
Paul Hart
Team member
