Glimmers of Determination from 12-Year-Old Fighting Bone Cancer in Santa Barbara

Ava Decker Creates Cancer Foundation While Battling Her Own Diagnosis

“I am not doing this foundation for me, it’s for all the children out there, and for all of my friends,” says Ava Decker. | Photo: Courtesy

Like many kids, Ava Decker is equipped with a community of stuffed animals; her mom’s, dad’s, and little brother’s love; her dog’s kisses and cuddles; and all of her favorite things and snacks as she lies in bed.

12 year old Ava Decker | Photo: Courtesy

At just 12 years old, Ava has the wisdom, compassion, and life experience of an adult. A cancer diagnosis, chemo treatment, and the day-to-day struggles of dealing with her illness have not hindered her bright and helpful spirit — against all odds.

In most ways, Ava is a normal tween girl: She enjoys playing video games, hanging out with her friends, going to school, spending time with her family, and eating (her favorite food is olives). Her diagnosis — osteosarcoma, a rare form of bone cancer that begins in the cells that form bones — was made in December 2022, and it has simultaneously flipped her world upside down and given her more appreciation, gratitude, and opportunities.

Osteosarcoma is typically found in children and teens, more specifically during growth spurts. After her diagnosis, Ava promptly started chemotherapy and had surgery.

“With osteosarcoma, every single person gets a surgery — you can’t really be in remission without it. I got a surgery in my left knee, my femur, and had a full knee replacement where they took out the tumor,” Ava explained.

But her original chemotherapy treatment plan wasn’t working, the cancer metastasized, and she is now on an alternative treatment.

When asked what day her surgery was, Ava knew. “It was April 18, 2023. I remember the exact day, because I was dreading it.”

Her surgery took about three hours with a five-month recovery time — she was terrified to walk right after and still has a substantial scar on her knee.

The whole thing has been a roller coaster. After her surgery, Ava was declared cancer-free, began finishing her chemo, and would get monthly scans of her lungs to ensure there were no tumors. That’s when they found that the cancer had spread all over: to her right femur, pelvis, sternum, spine, hips, and left bicep.

Ava Decker is staying in good spirits despite many trips to L.A. for treatment | Photo: Courtesy

This seemingly grim news hasn’t stopped Ava from filling her days with happiness and laughter, however. Though she is bedridden, Ava’s smile still lights up her room, and her wisdom is definitely beyond her years.

Asked what a typical day looks like, Ava describes taking a wheelchair walk, snacking on her favorite foods, playing video games, and watching her favorite show, I Love Lucy. However, each day brings its own challenges — there really isn’t a “typical day” with cancer. Some days, Ava and her family will pack up and head to L.A. for a couple of days for Ava’s chemotherapy, which involves a lot of pain and discomfort.

“There’s a lot of back-and-forth from here to L.A., and obviously the days there are very different,” said Vanessa Decker, Ava’s mom. “We have a completely different routine in a different city and house.”

The family ended up renting a one-bedroom place in L.A. because the drive would get too uncomfortable and the pain could become unbearable for Ava.

“Rather than doing the drive, it made sense to have a proper place to recover. In addition to her mobility issues, it’s harder for her to travel around,” said Vanessa.

In a time of uncertainty, where pain can be unpredictable, comfort is a top priority for Ava and her family. “My bed, my mom and dad, food, and all of my stuffed animals bring me the most comfort,” she said.

Surrounded with comfort and faced with pain, Ava is an inspiration — she wants to help others on top of her already hard diagnosis and treatment. “I want to have a very, very positive impact. I don’t want to have cancer and have nothing come out of it — so we’re making a foundation called Glimmers Childhood Cancer Foundation.”

Cancer is the leading cause of death by disease for children in the United States, and the federal funding for treatment and research is only 4 percent. Rightfully upset, Ava and her family believe this is a crisis that desperately needs direct attention. To help begin fighting these intense statistics, Ava and her family stepped into action to help as much as they can.

The Glimmers Childhood Cancer Foundation will have three main pillars targeted at the UCLA Family Center in L.A., where Ava is being treated: researching treatments, supporting families, and education and awareness.

A majority of the foundations now are focused on helping with the side effects of treatments, but Ava wants to go further. Her foundation will conduct cutting-edge research with her oncologist, Dr. Noah Federman, and his specialized pediatrics sarcoma team at UCLA to fund better, less painful treatments for cancer.

“These treatments are already so terrible, we need better treatments,” said Ava.

Ava and Vanessa Decker | Photo: Courtesy

Ava is receiving the same chemotherapy that was developed more than 50 years ago, originally made for adults. “I’m only receiving this treatment because there hasn’t been any other version for children made. It was originally made for adults, because it was too harsh for children.”

Further, Ava notes that sometimes when she receives cards or gifts, they aren’t really geared to kids her age or sometimes have a misinterpreted message, simply because it’s hard to fully understand cancer.

“I want to participate in writing the cards we send out, because I can empathize with them and say, like, ‘Hey, I know what you’re going through.’”

Ava also wants to be sensitive to the language used in the cards — terms like “warrior” and “hero” don’t necessarily land quite right, as Ava defines herself as a 12-year-old who happens to have cancer, not a warrior or hero by any means (though very brave and empathetic).

Vanessa further explains the ideal impact of Glimmers. As they began to walk this path, they noticed a lack of family support, lack of funding, and a lack in general. “We want to create a network of families who have cancer, where we can also be a part of giving back to each other,” she said.

Reflecting, Ava noticed how during chemotherapy, there were some children in foster care who would be completing their chemo alone. The idea of having to go through something so painful alone was unbearable to Ava, so she decided to help. “What I feel is that I need to give something. I can’t bear to see that happening.”

Ava Decker and her family started the Glimmers Childhood Cancer Foundation to spread education and awareness. | Photo: Courtesy

Her empathy and huge heart really shine through.

The family has extensively considered every detail of their foundation: They’re funding research, gathering age-appropriate toys, writing holiday-themed cards, decorating the hospital halls to brighten up the atmosphere, funding trauma-informed volunteers to work through the nonprofit to ensure that every child has someone with them at their bedside, and much more.

“Also, a big part of this foundation is really spreading awareness — a lot of people don’t know that there’s only 4 percent federal funding going to childhood cancer, and a lot of people don’t really know a lot about different types of cancer,” said Ava.

To help educate her peers, Ava and her friends did a presentation about cancer at their school, and students got to ask her questions and help spread awareness.

In addition to the Glimmers Foundation, Ava and her family are also working on creating a political activist movement titled “What’s Your Agenda?” where they call on local and state government officials to speak about the child cancer crisis and advocate for more funding and awareness. Their goal is to pass a bill for more funding, expedited insurance approvals, and declaring a national crisis for childhood cancer.

“It’s creating this grassroots movement of working together with your local congresspeople to get information to the surface,” Vanessa explained.

Seeing the horrors and pain of chemotherapy, loneliness in the hospital, and many other small painful details that don’t receive any aid or attention, Ava could not stand idle. “I am not doing this foundation for me; it’s for all the children out there, and for all of my friends.”

Before this journey, Ava was like any other child — unsure of the future, living in the moment, day to day. Now, the same in many ways, Ava has a newfound sense of gratitude and appreciation for the little things around her.

Ava’s story is unique in the sense that she is transforming her pain and what others would see as a tragedy into something that will help many families and children. Ava is simply a sweet, wise, compassionate and empathetic 12-year-old who wants to use whatever time she has to help as many people as she can.

For more information about Glimmers Childhood Cancer Foundation, see glimmersfoundation.org.