DAVENPORT, Iowa — They say a picture is worth 1,000 words. If that is true, Diane Koster's living room is bursting at the seams.
"We just miss her smile," Diane said while showing us the pictures around the room.
Diane's daughter, Lindsay Thul, is in pictures in almost every corner of the room. It's that space Diane feels most comfortable talking about Lindsay.
"It has gotten easier," Diane said. "But I miss her so much every day, and I don’t think I’ll ever stop grieving."
About six years ago, Lindsay was diagnosed with inflammatory breast cancer. It is a rare and aggressive form of the disease that makes up about three percent of all breast cancers, Diane said.
"It’s not a cluster of cancer cells, which is what they’re seeing on mammograms," Diane said. "If anything they might see some skin thickening on a mammogram, but they won’t see what makes up a lump."
Lindsay's diagnosis came as she had just purchased her first home and was enjoying her career, Diane said.
"Even with all my knowledge and background in radiology, Race for the Cure, all things breast cancer, that never occurred to me that my daughter had breast cancer," Diane said.
There is no family history of any cancers that run in the family, Diane said.
"Unfortunately, Lindsay was what they call triple negative," Diane said. "That’s the worst, because there are no receptors that were found that they could actually target a proven treatment."
Lindsay was 28 years old when she was diagnosed with Inflammatory Breast Cancer. On Feb. 1, 2017, at 29 years old, Lindsay died after a 10-month battle with the disease.
"I don’t want anyone to forget her," Diane said.
So, what did Diane do?
While Lindsay was sick, Lindsay would write blog posts about how she was feeling and how she viewed the world. Diane took all 88 entries and compiled them into a now-published book.
"I took all of those and wrote around them from my perspective as her mother and her primary caregiver," Diane said.
Those words now form Lindsay's Legacy. Proceeds from the book have already been used to help fund new research in treatments for Inflammatory Breast Cancer, Diane said.
"This is a love story, about a mom and her daughter," Diane said.
Wednesday, October 5, would have been Lindsay's 35th birthday. Every year since Lindsay's death, Diane makes a trip, on Lindsay's birthday, to visit her at the Oakdale Memorial Gardens cemetery in Davenport.
Those visits give Lindsay's legacy new life.
On Thursday, October 6, Diane was back to work. For the last three years, she's worked at Genesis Health System as a grant manager. She helps people receive preventative cancer screenings who otherwise could not afford them.
Diane also works on fundraising for the grant programs, which help make the screenings possible.
One of those fundraising events is on Saturday, Oct. 8. The second annual Gather for a Cure is being held from 9 a.m. until noon at Scott County Park in Eldridge. Diane says the group has a $25,000 fundraising goal, which is about what the group raised last year.
"I don’t want people to have to choose between getting their cancer screenings done and putting food on the table that week," Diane said. "Nobody should ever have to make that decision."
Diane's work is now a labor of love. She works as both an advocate and an educator for the Iowa Quad Cities Community.
That's because health leaders have seen more late-stage cancer diagnoses right now after the COVID pandemic, Diane said. Many people put off those preventative screenings during the pandemic, and some health providers stopped offering the screenings altogether during that time, too, Diane said.
"I want as many people as possible to learn about this terrible disease," Diane said.
Diane is now writing the words to this story, which gives Lindsay's legacy lasting hope.
You can learn more about inflammatory breast cancer by visiting the IBC Network Foundation's website.
If you would like to contact Diane about prevention screenings and see if you qualify under the conditions of the grant programs, you can call Genesis at 563-421-1000 and ask to speak to Diane Koster in the Women's Health Grant Program office.
If you would like to support the grant programs that make these preventative screenings possible, you can visit the Genesis Foundation's website, the Lindsay's Legacy Fund website or the Center for Breast Health giving page.
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