When Gilbert Eugene Crawford, Sr. was diagnosed with prostate cancer, his daughter and primary caregiver Valerie Crawford-Schiele was shocked to discover just how few resources existed for patients with prostate cancer and their caregivers.
When Gilbert Eugene Crawford, Sr. was diagnosed with prostate cancer, his daughter and primary caregiver Valerie Crawford-Schiele was shocked to discover just how few resources existed for patients with prostate cancer and their caregivers. The whole family worked to support and care for Gilbert, but Valerie found that it was mostly the women in her family that took on the responsibilities that come with being a caregiver. After a 12-year battle with prostate cancer, Gilbert passed in 2014. To prevent other families from experiencing the hardships they did, Valerie and her daughter Shavonn Richardson founded the nonprofit organization Blue Flowers Org to support women and the men in their lives against prostate cancer.
CURE recently spoke with Valerie and Shavonn to discuss their personal experiences with prostate cancer and how those experiences fueled the founding of their organization.
Can you tell me about how Blue Flowers came to be?
Valerie: We are a 501(c)(3) non-profit organization empowering women and the men in their lives against prostate cancer. We exist for one reason only: My father lived, suffered and died from prostate cancer. Throughout his 12 year battle with prostate cancer, I realized there were very little resources available to me as a primary caregiver and as an advocate for my father’s health care.
Blue Flowers was born out of my family’s personal experience as we supported and advocated for my father, primarily the women in my family. Women, overall, make 80 percent of the health care decisions in families. We created Blue Flowers to specifically target women, which is different because prostate cancer is a disease that only affects men. Our organization’s approach is different from others, because it offers a holistic perspective to treating the whole person (mind, body, spirit).
When I was young, I observed my parents and grandparents assist family and friends by welcoming them into our home in their time of need. I grew up watching my parents and grandparents always assisting and helping others.
All we’re doing is continuing that legacy of my family by helping others. For us, this organization helps us deal with our loss and ease our grief. By helping other people, we are helping ourselves deal with this process.
What was the most difficult part of caring for your father?
Valerie: To see someone you love go from being an active, healthy and independent man to being highly dependent and no longer able to care for himself is extremely difficult. We watched him die slowly before our very eyes. That is the most difficult thing I have ever had to do and I hope I never have to do it again. We don’t want other families to experience what we did, the pain we felt and the pain we continue to feel.
Shavonn: My family had to figure a lot of things out as we went along regarding prostate cancer and how to best care for my grandfather. The learning curve was so steep because we had to start with the basics, but you need to learn everything so quickly. My mother worked hard and did so much to help my grandfather: She called doctors, tried to assist him with health insurance, figured out how to get hospice care and fought to get the best service delivery.
Because I didn’t know anything about prostate cancer, I didn’t know how to support my grandfather in a way that he needed. A key part of our organization is helping women who are going through what we went through. We can share what we’ve learned and our experiences with women who may not have the resources or information to help their loved one. We want to be that resource, offering very basic, logistical knowledge, such as nutritional advice specific to prostate cancer, as well as help with depression, etc. after diagnosis.
Can you explain how you came up with the name Blue Flowers?
Shavonn: Our symbol for the organization are Forget-Me- Not flowers. The flower is representative that we never forget those we have lost to prostate cancer. It drives us to raise awareness about prostate cancer.
Additionally, brides often wear something blue on their wedding day because the color represents loyalty, trust and hope. Blue is also the color of prostate cancer awareness.
Can you tell me about some of the programs Blue Flowers has to offer?
Shavonn: We have three programs: Prostate Cancer Care 360TM, Bridging the Gap and Prostate Cancer Education Connections.
Prostate Cancer Care 360TM is directed at the mental, physical and spiritual aspects of prostate cancer. The mental aspect deals with depression and different mental health issues that occur after a diagnosis. The physical talks about treatment and symptoms, helping guide people to decide what options are best for their loved one. With the spiritual aspect, we encourage motivation and inspiration by providing a lot of motivational articles.
Bridging the Gap program focuses on health care disparities among African American men and minorities. Within that program, we have partnered with the Center for Cancer Research and Therapeutic Development at Clark Atlanta University in Atlanta, GA. They’re the only center in the United States that focuses on prostate cancer research for African American men. The Prostate Cancer Registry, is where African American men who are prostate cancer survivors record their experiences, including what treatments worked for them, all of which goes into a database. Clark Atlanta uses the information to improve the research for African American men. We know African American men are more affected by prostate cancer than any other demographic, but we don’t know why. Clark Atlanta is trying to figure this out. Our role in this community is to help them figure out why by getting men to register in the Prostate Cancer Registry. That all helps close the health care disparity.
Another part of Bridging the Gap program is serving men in underserved communities who don’t have access to health care. My grandfather lived in a rural community. His nearest neighbor was two or three miles away. There are men like him who are far away from metropolitan areas or men who are in a low-income metropolitan area, all of who don’t have access to quality health care. To help, we provide services such as opportunities for free screenings at hospitals to those without insurance.
Prostate Cancer Education Connections is the education and awareness piece of our organization. Everything we do as far as working with the community and participating in health fairs is all around education and awareness. We are currently working on launching online training to inform people about prostate cancer. It will be really light, fun and engaging. People learn something, but it still maintains their attention. We’re still in the process of building that. Any fundraising we do goes towards launching that on our website. We plan to later expand it by having in- person education opportunities as well.
What are the goals of Blue Flowers?
Shavonn: Our goal is not to just engage men who are 40 years and older, but also the upcoming generation. We want to impact the younger generation and help them understand the seriousness of prostate cancer.
On September 15, 2016, we will hold our annual fundraising reception called “Shades of Blue” at the 46th Annual Congressional Black Caucus Foundation Annual Legislative Conference. It’s an opportunity for families who have been affected by prostate cancer, members of the business community, politicians and those in the medical community to come together and realize the role we all play in prostate cancer awareness.
What would your father/grandfather say if he could see Blue Flowers and all you’ve done?
Valerie: My father was a cool man for his age. He was not a typical 83-year- old. He would say “Wow! You’re doing all this for me? That’s cool!”
He would be amazed, just as we are. We’re excited about what we’ve accomplished so far, how much we’ve progressed in less than two years and we definitely look forward to building this organization even more.