Wendy is a retired social work supervisor who sells jewelry and leads a sales team of 300 across the US. She is also an advocate for childhood cancer survivors, parents, and caregivers. Her son, Stephen, was a well-known, well-liked, vibrant person who enjoyed being active. Wendy thought her job as a mother would be easy, until suddenly, Stephen required significantly more care.
Around age 3, Stephen started vomiting white liquid and losing his balance. Wendy took him to see a doctor, who told her Stephen either had vertigo or a brain tumor. After a computerized tomography (CT) scan, Wendy was told that Stephen had a malignant medulloblastoma, the most common type of childhood brain cancer, and that he needed surgery. Stephen’s brain tumor was completely resected, and he had a ventriculoperitoneal (VP) shunt implanted to drain the cerebral spinal fluid. Afterwards, the doctors presented Wendy with only one treatment option: to have Stephen participate in a clinical trial to receive high-dose chemotherapy; however, there was an issue. Wendy was told that Stephen did not qualify to participate because he was Black. Wendy was furious. She advocated for her son and was successful in getting him the same treatment as the trial participants. “That was just the beginning of our journey."
Once Stephen completed the treatment, Wendy wanted everything to be right for him. Unfortunately, his health continued to be a concern for years, and he was often in and out of the hospital. Once, Stephen experienced testicular torsion, and Wendy rushed him to the hospital so doctors could save his testicle. Then, Stephen’s VP shunt malfunctioned, and a new one was placed.
A New Cancer
At age 15, Stephen started falling asleep in class. At first, Wendy thought his VP shunt was malfunctioning again, but that was not the answer. Wendy could not figure out what was happening, so she took Stephen to the ER. The doctor discovered a tumor in Stephen’s large intestine that had ruptured and was blocking his small intestine. When the tumor was biopsied, Stephen was diagnosed with colon cancer.
Three years after his first round of treatment for colon cancer, the cancer metastasized to the abdominal wall. Doctors informed Wendy that Stephen might only have months to live. For Wendy, Stephen’s quality of life had always been her top priority because he had always been so vibrant and active. Wendy and the doctors decided to treat Stephen with chemotherapy only, in order to maximize his quality of life. He would also need an ileostomy. By choosing to prioritize quality of life, Stephen was able to continue doing many of the things he enjoyed, including managing the high school football teams. He was even well enough to meet LeBron James.
Throughout Wendy’s caregiving journey, she received wonderful support from her mother, friends, and Stephen’s nurse. When Stephen was first diagnosed with cancer, Wendy’s mother was 80 years old, but she was consistently present for Wendy and Stephen, providing the support that Wendy needed. Wendy’s friends also checked in with her, and Stephen’s nurse was a navigator who cared for him, made referrals, and helped Wendy with her concerns, as well.
Being an Advocate for Caregivers
When Stephen was first diagnosed with a brain tumor, Wendy tried to find someone else diagnosed with medulloblastoma but couldn’t. She felt like she had no one. “I just wanted some support, and I didn’t get any support. Like, couldn’t get anybody that’s had it before, that could tell me, give me pros, cons. This is good. Try this. Try that. I had none of that. I had nobody that I could, like, throw stuff on and get it back.”
Wendy realized that she wanted to create an opportunity for the kind of support that she had been missing. With no staff, budget, or other resources, she created the Facebook group Parents of Kids with Medulloblastoma. The group quickly grew, as Wendy connected with other caregivers and families.
Wendy also struggled with the lack of support she received from her long-time employer. After Stephen was diagnosed with colon cancer and Wendy’s caregiving journey became more difficult, her employer moved her to another social work unit. She felt lost and betrayed. Later, her employer told her they may not be able to keep her on. She was devastated.
“This place I grew up at, they had been very supportive of me, now felt like foreign land, like a war zone. And so, that’s kind of my story of caregiving. It’s like an inner war zone.”
On Valentine’s Day in 2016, Stephen passed away. Wendy’s world was shattered, but even in her grief, she found a way to honor his legacy by turning her pain into purpose. She continued her career in social work for another year before retiring at age 50. To honor Stephen’s memory, Wendy founded Stephen's Purpose to provide support, advocacy, and education to families of children diagnosed with cancer. She transformed her grief and was able to support a number of childhood cancer research efforts including 46 Mommas Shave For The Brave benefitting St. Baldricks Foundation, the American Childhood Cancer Organization, and the Childhood Cancer Survivorship, Treatment, Access, Research (STAR) Act.
Since then, her life has continued to be stressful, but Wendy’s resilience has helped her push forward. Currently, the Facebook group Parents of Kids with Medulloblastoma includes over 5,000 families. In addition, Wendy sells jewelry online to supplement her retirement.
Wendy’s Advice to Caregivers
While caring for Stephen, Wendy struggled to find people who shared similar experiences. One thing she would like caregivers to know is that there are others like them. Caregivers should try to be open to receiving support instead of trying to take everything on themselves.
“It is so much more refreshing when you hear people who are going through it, going through the same thing that you’re going through. I don’t know how anyone does this alone. I can’t even imagine how they do it alone. And I know that they do. But just open yourself up to support.”
Wendy would also like to remind caregivers to take care of themselves. “That’s one of the things; my girlfriends always made sure I was able to do stuff for me. And my community, at one point, made sure that my daughter and I had opportunities to do things together. Make sure you do something for you.”
Image: Wendy and Stephen
It is so much more refreshing when you hear people who are going through it, going through the same thing that you’re going through. I don’t know how anyone does this alone. I can’t even imagine how they do it alone. And I know that they do. But just open yourself up to support.