PFCC offers mom a way to help others, give back 

Ethan Steele was only 3 years old when he started vomiting and having frequent headaches. His mom, Kamala, took him to several doctors. Each one misdiagnosed Ethan’s condition. 

Finally, during a trip to the emergency room, doctors found a tumor. They drained fluid off Ethan’s brain and diagnosed pineoblastoma, an aggressive tumor that starts in the pineal gland.  

“They told me he had cancer, but where it was, he pretty much was not going to survive,” Kamala says. 

But Kamala was not ready to give up. She wanted Ethan to see a doctor at St. Jude Children’s Research Hospital. So, she learned how to seek treatment. Soon she and Ethan were on their way to St. Jude. 

When Ethan was 6, doctors at St. Jude found a thyroid tumor.  

“They did a test that showed the tumor wasn't cancer,” Kamala says. “They asked me what I wanted to do. It's why I love St. Jude. They wanted my input.” 

Kamala opted to have the tumor removed. And doctors discovered that it was cancer after all.  

Kamala’s gratitude to St. Jude led her to the Patient Family-Centered Care (PFCC) program. The PFCC program gives its members a chance to work directly with St. Jude staff to improve the patient experience.  

Kamala first joined as a caregiver mentor. In this role, she talked with other caregivers about their experiences at St. Jude. She shared her story with others and listened as they told her their stories. She often told families, “I don’t understand, but I understand.” 

Today, Kamala volunteers as a PFCC adviser. In this role, she gives input and feedback to several steering councils. These steering councils report up to the Patient Family Advisory Council, which gives advisers a chance to share their voice in different ways.  

Kamala’s work with the PFCC program has allowed her to give back to St. Jude.  

“They gave me my son,” she says. “It's really hard to repay that, but it does make me feel like I'm making steps toward that.”