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?
What does being a member of FAN entail?
What kind of projects or activities have you been a part of during your involvement?
Why do you think your involvement as a patient parent is important?
What issues are you particularly passionate about that you are advocating to see implemented at Children’s Health?
To learn more about FAN and how to get involved, visit childrens.com/FAN.
