Nine-Year-Old’s Cancer Diagnosis Sparks Family’s Commitment to Advocacy
Steven (Stevie) Raposo, of Fall River, Massachusetts, was just nine years old when he noticed a lump on his tongue. It was relatively small, and it looked almost like a scar, as if he had bitten the side of his tongue while eating.
Jenn Raposo, Stevie’s mom, first mentioned the lump to his dentist during a routine cleaning. Their family dentist referred Stevie to an oral surgeon who removed the lump and sent it for pathology testing.
“I got a phone call that I needed to come into the office and that I should bring someone with me, because it was a lot of information,” Jenn said. “When I heard the diagnosis, I was shocked, terrified, and so fearful of losing my son.”
A shocking discovery
The results showed that Stevie had a rare and aggressive type of soft tissue sarcoma called clear cell sarcoma. This type of cancer is usually described by its location in the body. It can develop in soft tissues including fat, muscle, nerves, or deep skin tissues. The type of clear cell sarcoma Stevie had is found in the gastrointestinal tract and is not commonly seen in children.
Stevie underwent a series of imaging tests, including an MRI, CT scan, and PET scan. Test results showed nodules on his lungs and enlarged lymph nodes. Together with specialists at Boston Children’s Hospital and Dana-Farber Cancer Institute, Stevie and Jenn made the decision to have surgery to remove as much of the cancer as possible.
Just before Stevie’s 10th birthday, he had a wedge of his tongue taken out. The goal was to get the clear margins of the tumor and remove all the cancerous tissue, including a surrounding rim of healthy tissue. Doctors also took some lymph nodes out of his throat area. They did not go into his lungs, as the surgery was invasive, and there was a possibility that the nodules could be from something else instead of cancer.
Thankfully, Stevie’s surgery was a success, resulting in clear margins around where the tumor had been. Additionally, no abnormalities were found in his lymph nodes. No further treatment was recommended. Today, Stevie’s doctors monitor him routinely through lung CT scans and MRIs. He will continue to get regular scans and checkups at Dana-Farber Cancer Institute until he’s 15 years old.
“One milestone we’re looking forward to is when he turns 15, and we are done with scans,” Jenn said. “We’re going to throw a party.”
Seeking support
During Stevie’s cancer journey, Jenn said one of the biggest challenges was dealing with their family’s collective mental health.
During his cancer journey, Stevie found support by attending summer camp at The Hole in the Wall Gang Camp, which offers programs for children with serious illnesses. He also hoped to show support for other children facing a cancer diagnosis. Though he didn’t lose his own hair, he chose to shave his head in solidarity.
Jenn added that even after the surgery, the family felt a constant fear, wondering when or if the cancer might return. To deal with those feelings, Jenn leaned on family and friends for support. She urges others who are in similar situations to do the same and reach out for help.
“Please know that what you are feeling is valid and that you’re not alone,” she said. “Getting a cancer diagnosis is not an easy thing, and no one, or no family, should do it on their own.”
Relay For Life’s impact
A year before Stevie’s diagnosis, Jenn and her family attended a Relay For Life event with a friend. They had a wonderful time and had planned to join a team the following year to support the American Cancer Society’s mission.
After Stevie was diagnosed with cancer, the Raposos returned to Relay For Life, this time as more than just supporters. Stevie was able to walk the Survivor’s Lap, marking a powerful moment in their journey. The Raposo family now plans to join the event’s leadership committee. Additionally, Stevie makes bracelets to sell during the event to help raise money for ACS.
“Life is slowly getting back to normal, but cancer is now a part of our lives,” Jenn said. “The American Cancer Society and Relay For Life are things we’ll continue supporting for the rest of our lives.”
- Reviewed by
Reviewed by the American Cancer Society communications team.
