Like many youngsters, Ava Decker is provided with a group of stuffed animals; her mother’s, dad’s, and little brother’s love; her canine’s kisses and cuddles; and all of her favourite issues and snacks as she lies in mattress.
At simply 12 years outdated, Ava has the knowledge, compassion, and life expertise of an grownup. A most cancers prognosis, chemo remedy, and the day-to-day struggles of coping with her sickness haven’t hindered her shiny and useful spirit — towards all odds.
In most methods, Ava is a traditional tween lady: She enjoys taking part in video video games, hanging out together with her pals, going to highschool, spending time together with her household, and consuming (her favourite meals is olives). Her prognosis — osteosarcoma, a uncommon type of bone most cancers that begins within the cells that type bones — was made in December 2022, and it has concurrently flipped her world the wrong way up and given her extra appreciation, gratitude, and alternatives.
Osteosarcoma is often present in youngsters and teenagers, extra particularly throughout development spurts. After her prognosis, Ava promptly began chemotherapy and had surgical procedure.
“With osteosarcoma, each single particular person will get a surgical procedure — you may’t actually be in remission with out it. I received a surgical procedure in my left knee, my femur, and had a full knee alternative the place they took out the tumor,” Ava defined.
However her authentic chemotherapy remedy plan wasn’t working, the most cancers metastasized, and she or he is now on another remedy.
When requested what day her surgical procedure was, Ava knew. “It was April 18, 2023. I keep in mind the precise day, as a result of I used to be dreading it.”
Her surgical procedure took about three hours with a five-month restoration time — she was terrified to stroll proper after and nonetheless has a considerable scar on her knee.
The entire thing has been a curler coaster. After her surgical procedure, Ava was declared cancer-free, started ending her chemo, and would get month-to-month scans of her lungs to make sure there have been no tumors. That’s once they discovered that the most cancers had unfold throughout: to her proper femur, pelvis, sternum, backbone, hips, and left bicep.
This seemingly grim information hasn’t stopped Ava from filling her days with happiness and laughter, nonetheless. Although she is bedridden, Ava’s smile nonetheless lights up her room, and her knowledge is unquestionably past her years.
Requested what a typical day appears to be like like, Ava describes taking a wheelchair stroll, snacking on her favourite meals, taking part in video video games, and watching her favourite present, I Love Lucy. Nevertheless, every day brings its personal challenges — there actually isn’t a “typical day” with most cancers. Some days, Ava and her household will pack up and head to L.A. for a few days for Ava’s chemotherapy, which entails quite a lot of ache and discomfort.
“There’s quite a lot of back-and-forth from right here to L.A., and clearly the times there are very completely different,” mentioned Vanessa Decker, Ava’s mother. “We have now a very completely different routine in a special metropolis and home.”
The household ended up renting a one-bedroom place in L.A. as a result of the drive would get too uncomfortable and the ache might grow to be insufferable for Ava.
“Quite than doing the drive, it made sense to have a correct place to get better. Along with her mobility points, it’s tougher for her to journey round,” mentioned Vanessa.
In a time of uncertainty, the place ache will be unpredictable, consolation is a high precedence for Ava and her household. “My mattress, my mother and pa, meals, and all of my stuffed animals convey me essentially the most consolation,” she mentioned.
Surrounded with consolation and confronted with ache, Ava is an inspiration — she desires to assist others on high of her already onerous prognosis and remedy. “I need to have a really, very optimistic influence. I don’t need to have most cancers and don’t have anything come out of it — so we’re making a basis referred to as Glimmers Childhood Most cancers Basis.”
Most cancers is the main explanation for dying by illness for youngsters in the USA, and the federal funding for remedy and analysis is just 4 %. Rightfully upset, Ava and her household imagine this can be a disaster that desperately wants direct consideration. To assist start preventing these intense statistics, Ava and her household stepped into motion to assist as a lot as they will.
The Glimmers Childhood Most cancers Basis may have three primary pillars focused on the UCLA Household Heart in L.A., the place Ava is being handled: researching therapies, supporting households, and training and consciousness.
A majority of the foundations now are centered on serving to with the unwanted effects of therapies, however Ava desires to go additional. Her basis will conduct cutting-edge analysis together with her oncologist, Dr. Noah Federman, and his specialised pediatrics sarcoma group at UCLA to fund higher, much less painful therapies for most cancers.
“These therapies are already so horrible, we want higher therapies,” mentioned Ava.
Ava is receiving the identical chemotherapy that was developed greater than 50 years in the past, initially made for adults. “I’m solely receiving this remedy as a result of there hasn’t been another model for youngsters made. It was initially made for adults, as a result of it was too harsh for youngsters.”
Additional, Ava notes that typically when she receives playing cards or items, they aren’t actually geared to youngsters her age or typically have a misinterpreted message, just because it’s onerous to totally perceive most cancers.
“I need to take part in writing the playing cards we ship out, as a result of I can empathize with them and say, like, ‘Hey, I do know what you’re going by way of.’”
Ava additionally desires to be delicate to the language used within the playing cards — phrases like “warrior” and “hero” don’t essentially land fairly proper, as Ava defines herself as a 12-year-old who occurs to have most cancers, not a warrior or hero by any means (although very courageous and empathetic).
Vanessa additional explains the perfect influence of Glimmers. As they started to stroll this path, they observed a scarcity of household help, lack of funding, and a scarcity normally. “We need to create a community of households who’ve most cancers, the place we will also be part of giving again to one another,” she mentioned.
Reflecting, Ava observed how throughout chemotherapy, there have been some youngsters in foster care who can be finishing their chemo alone. The thought of getting to undergo one thing so painful alone was insufferable to Ava, so she determined to assist. “What I really feel is that I would like to offer one thing. I can’t bear to see that taking place.”
Her empathy and large coronary heart actually shine by way of.
The household has extensively thought-about each element of their basis: They’re funding analysis, gathering age-appropriate toys, writing holiday-themed playing cards, adorning the hospital halls to brighten up the ambiance, funding trauma-informed volunteers to work by way of the nonprofit to make sure that each little one has somebody with them at their bedside, and far more.
“Additionally, a giant a part of this basis is absolutely spreading consciousness — lots of people don’t know that there’s solely 4 % federal funding going to childhood most cancers, and lots of people don’t actually know rather a lot about various kinds of most cancers,” mentioned Ava.
To assist educate her friends, Ava and her pals did a presentation about most cancers at their college, and college students received to ask her questions and assist unfold consciousness.
Along with the Glimmers Basis, Ava and her household are additionally engaged on making a political activist motion titled “What’s Your Agenda?” the place they name on native and state authorities officers to discuss the kid most cancers disaster and advocate for extra funding and consciousness. Their purpose is to cross a invoice for extra funding, expedited insurance coverage approvals, and declaring a nationwide disaster for childhood most cancers.
“It’s creating this grassroots motion of working collectively together with your native congresspeople to get data to the floor,” Vanessa defined.
Seeing the horrors and ache of chemotherapy, loneliness within the hospital, and plenty of different small painful particulars that don’t obtain any assist or consideration, Ava couldn’t stand idle. “I’m not doing this basis for me; it’s for all the youngsters on the market, and for all of my pals.”
Earlier than this journey, Ava was like another little one — not sure of the long run, residing within the second, daily. Now, the identical in some ways, Ava has a newfound sense of gratitude and appreciation for the little issues round her.
Ava’s story is exclusive within the sense that she is reworking her ache and what others would see as a tragedy into one thing that can assist many households and kids. Ava is just a candy, smart, compassionate and empathetic 12-year-old who desires to make use of no matter time she has to assist as many individuals as she will.
For extra details about Glimmers Childhood Most cancers Basis, see glimmersfoundation.org.
