Caroline and Marissa’s story
Following Caroline’s two-and-a-half-year chemotherapy treatment at Children’s Health, her mother, Marissa, joins our Family Advisor Network (FAN) to contribute her voice to help improve care for patients and families of color.
In the fall of 2016, 5-year-old Caroline began struggling with fatigue, night sweats and eventually swollen lymph nodes and leg pain. Worried about what this could mean, her mother, Marissa, took Caroline to her pediatrician. After the third visit with no answers, Caroline was referred to Children’s Health Plano.
On October 26, 2016, Caroline was diagnosed with pre-B acute lymphoblastic leukemia. She was transferred that night to the Pauline Allen Gill Center for Cancer and Blood Disorders (CCBD).
“To say that this was devastating would be an understatement,” Marissa says. “We were quickly immersed in the world no parent ever wants to visit: pediatric oncology.”
Within a few hours, Caroline began what would be a two-and-a-half-year chemotherapy protocol. Within 24 hours, she had a port surgically implanted in her chest and her family was trying to digest the mountain of information needed to help Caroline on her journey.
After several tests, Caroline's leukemia was diagnosed as standard risk. “In this worst-case scenario, [standard risk] is what was hoped for,” Marissa says.
Caroline and her family spent the next two years in what Marissa called “survival mode.” While there were some bumps in the road, Marissa praises Caroline’s entire care team for not only providing life-saving care to her daughter but also emotionally supporting the whole family.
“The treatment team and resources made available to us made this painful journey more bearable,” Marissa says. “From Dr. Sloan – who is one of the most amazing human beings I've ever met – to the nurses, the patient educators, the Child Life staff, the social workers -- the team was a lifeline for us… We never would have made it through this time without them. They were caring, patient, professional, empathetic and – most importantly – skilled, which saved my daughter’s life.”
On January 19, 2019, Caroline rang the bell at CCBD Plano, signifying the completion of her chemotherapy protocol. She’s now 10 years old and thriving, and loves cooking, fashion, dance, singing and volleyball.
“The love and attention shown to her and our family [when she rang the bell], including the singing, still lives freshly in my memory,” Marissa says.
After Caroline recovered, Marissa decided to join our Family Advisor Network (FAN) to contribute her voice to help improve care for patients and families of color.
Questions with a FAN Family
What interested you in becoming a member of our Family Advisor Network?
Through the course of Caroline's journey, I realized that from a diversity standpoint, there was a need to have the experiences of patients of color and their families heard and there were no African American families involved in FAN at the time. I also wanted to help continually improve the experience for other families who came behind us.
What does being a member of FAN entail?
I am a member of the Plano and Dallas FAN. The commitment is a monthly meeting for each and time spent working on the projects that I volunteer to take on.
What kind of projects or activities have you been a part of during your involvement?
I have participated in many surveys to help improve programs and offerings at Children’s Health – the most recent one being on the Children’s Health mobile app. I’ve participated in town halls, provided feedback on the Children’s Medical Center Plano Expansion project as it pertains to amenities and features. I’ve also written for the oncology newsletter to ensure families are aware of mental health support.
Why do you think your involvement as a patient parent is important?
I brought a unique perspective to the group as a Black mom. There were areas from standards of care to social issues that held nuances specific to being African American that I felt were important to be expressed.
What issues are you particularly passionate about that you are advocating to see implemented at Children’s Health?
I am passionate about seeing more intentionality around diversity, equity and inclusion overall at Children’s Health, but also specifically when it comes to both the patient experience and the standard of care given to patients. This touches everything from the treatment protocol to family programming, and it’s critical that diverse needs and experiences help shape that.
To learn more about FAN and how to get involved, visit childrens.com/FAN.
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