Essie Bass is looking for her match, and for this 16 year old, it's what's inside your bones that could make a lifesaving difference.
In 2016, the Palm Coast teen was diagnosed with chronic myeloid leukemia, a cancer rarely seen in children according to the American Cancer Society. The average age of a person diagnosed with CML is 64 years old, and this has posed an extra challenge since Bass was diagnosed at age 11, following a knee injury. For almost five years afterward, Bass took medication after medication, and while she went into eventually went into remission for her blood, Bass has always battled with the cancer in her bone marrow.
“You hear of cancer, but you don’t know what it’s like until it hits your home," said her mother, Shannon Gutierrez.
After Bass relapsed last December with cancer in her blood, doctors upped the amount of chemotherapy she underwent. When that didn't work, they switched to a different chemotherapy. That also didn't work.
So, the doctor determined it was time to look into a bone marrow transplant.
“But we can’t find a match," Gutierrez said. "We’re having a hard time because of her nationality.”
According to the Health Resources and Services Administration, though 38 million potential marrow donors are available worldwide, patients of racially and ethnically diverse backgrounds struggle to find a match. Only 30% of patients have a relative who is a match and is able to donate their bone marrow; 70% of patients, are tasked with waiting for a match.
Bass is half-Hispanic, and half-white.
Gutierrez hoped to be able to donate her own bone marrow, but she only matched half of the markers and, as a mother of six children, her blood contained too many antibodies because of her past pregnancies.
“It just feels like we’re going in circles — getting told the same thing at every doctor’s appointment," Bass said.
Instead of waiting, the family decided to actively search for a bone marrow match for Bass.
In December, the family hosted a swab drive in Palm Coast for Be The Match, a nonprofit organization operated by the National Marrow Donor Program that manages a worldwide bone marrow registry to help patients with life-threatening blood cancers like leukemia and lymphoma find a match.
On Jan. 16, a benefit event will be held at Finn's Beachside Pub from 2-6 p.m. Swab kits will be on-hand and attendees can enjoy food, live music, and participate in a raffle.
For Bass, it's also an opportunity to raise awareness about childhood cancer, something both she and her mom said is lacking.
“It’s good to see that we’re able to be a voice and speak out in our community, because there’s a lot of kids — not just me, there’s 27 of us in Flagler [battling cancer],” Bass said.
'I know there's someone out there'
Bass may be waiting for a bone marrow transplant, but she is not taking time for granted.
About five months ago, she joined the Ormond Beach Police Explorers, a youth volunteer program that allows participants to see what a career in law enforcement could be like. Ormond Beach Police Sgt. John Dovine is her sister's football coach, and the connection brought her to the program. That, and the fact that one day, Bass hopes to work in law enforcement.
Gutierrez said she knows the family is not alone; support from the community and organizations like the Live Like Cameron Foundation is evident. But not being able to find a bone marrow match is frustrating.
Yet, neither she nor Bass have lost hope. After all, Essie's full name, Esperanza, means hope in Spanish.
“I know there’s someone out there, but just when," Bass said. "And where are you?”