The American Childhood Cancer Organization of Arkansas works to help benefit the lives of young people like the resilient Elijah Talley.
Photography by Sara Edwards Neal
[dropcap]When[/dropcap] it comes to cancer, the best line of defense is usually prevention and early detection, but that is not always possible when the patient is a child.
Younger cancer patients are at greater risk, because in 80 percent of cases children aren’t diagnosed until the cancer is advanced and has spread to other parts of the body. In adults, this occurs in 20 percent of cases.
Cancer remains the leading cause of death in Americans under age 20. Each year, nearly 16,000 children are diagnosed with cancer; leukemia and brain tumors accounting for the majority of cases. The median age at diagnosis is 6.
It is these youngest patients that the American Childhood Cancer Organization of Arkansas (ACCO) works to serve. The organization provides services and support to cancer patients up to 21 years of age, their families, survivors of childhood cancer and bereaved families who have lost children to cancer. The organization also provides leadership through advocacy and awareness and supports research.
Next month, the ACCO will host its annual Gallery of Hope, an art auction benefiting Arkansas’ youngest cancer patients and their families. Some of the art was created by cancer patients. The event is the ACCO’s main fundraiser, and organizers hope to raise $50,000.
“Any kind of diagnosis is devastating emotionally but also financially,” said Cory Davis, executive director of the ACCO. “We offer practical financial assistance to alleviate a little of the burden.”
The organization gives $600 to families to use as needed, and up to $1,200 in funeral assistance, and the organization works closely with social workers in hematology and oncology departments to identify families in need.
Dawn and Britt Talley of Little Rock are among the many families who have received assistance from ACCO. The couple’s son, Elijah, now 15, was diagnosed when he was 4 with Stage 4 neuroblastoma, a form of cancer in which a tumor forms along the sympathetic nervous system. The disease typically shows up in children between the ages of 3 and 5.
“We went from a two-income family to a one-income family with more expenses,” said Dawn Talley, who now works as area coordinator for the pediatric intensive care unit at Arkansas Children’s Hospital. “We started having struggles.”
When Elijah was 4, he experienced leg pain, ran a low-grade fever and suffered from fatigue. Blood tests and x-rays always came back normal, so doctors initially attributed his vague, but common symptoms to a viral infection or simple growing pains.
“We knew there was something wrong because it was out of character for our son,” Talley recalled. Later, a bone scan revealed several areas of inflammation, indicating infection or tumor activity. The cancer had metastasized to his bones and bone marrow.
“Neuroblastoma is very aggressive in nature,” Talley said. “The prognosis is good — if you get it taken care of with front-end treatment.”
Elijah had six rounds of high-dose chemotherapy at Arkansas Children’s Hospital, followed by a stem cell transplant and several weeks of radiation. Six months after his final treatment, he relapsed. More chemotherapy, more radiation and another stem cell transplant followed.
Because the prognosis for relapse is poor, Elijah, Talley and husband Britt, an architect, travel often to Children’s Hospital of Philadelphia for Elijah to see an oncologist who specializes in neuroblastoma relapse. Experimental medicine is the family’s best hope, and Elijah has participated in multiple Phase 1 and Phase 2 clinical trials. He’s currently being treated with a combination of chemotherapy and antibody therapy.
“We’ve had some luck with a few,” Talley said. “For the most part, this year has been tough.”
Elijah recently completed his freshman year at Catholic High School.
“Quality of life is our focus,” Talley said. “As with any chronic illness, it waxes and wanes. There are times you feel good, and times when you feel bad. Fortunately, there have been enough advances in the medical world where there are options available to him.”
Since Elijah’s diagnosis, the family has become more involved with ACCO. Talley served as a parent member on ACCO’s board for several years, and now her daughter, Hannah Troillet, 23, serves on the board. Elijah, who enjoys art, has donated some of his artwork to the Gallery of Hope auction, again this year.
The experience has been “life-altering” for the family. “We’ve adjusted and established a new normal for our family,” Talley said. “We do things a little differently than some people might. Our focus has been on finding joy in the small things and looking for miracles in the everyday.
“We have people who tell us they don’t know how we manage to be so strong, but the truth is when you’re a parent, you do what you have to do for your kids,” she said. “You have to remain hopeful and positive. The everyday miracles get you through.”
GALLERY OF HOPE
Sept. 25, 7 to 10 p.m.
Next Level Events
1400 W. Markham St. / Little Rock
Tickets $50 per person and includes
heavy hors d’ oeuvres and open bar.
For more information, call 870.703.7700
or log on to acco.org/Arkansas.