A Story of Triumph – How a Young Cancer Survivor is Promoting AYA’s Mission of Hope and Healing
A cancer diagnosis was the last thing 16-year-old high school student Carlie Aguilar was thinking about. A high-achieving student at Boerne High School near San Antonio, Carlie was enjoying her junior year filled with AP classes, student council duties, and church youth group activities. But a week-long illness in 2014 that culminated in pneumonia led to further testing and unexpected, shocking news for Carlie and her family – a rare dual diagnosis of both acute lymphoblastic leukemia (ALL) and acute myeloid leukemia (AML). Today, Carlie – a 20-year-old accounting major at Texas A&M University – has already overcome challenges that many her age could never imagine. After two bouts with leukemia and a successful bone marrow transplant a year ago, Carlie is back on track with her college plans and using her experience as a cancer survivor to help others as a board member of the AYA San Antonio Foundation – an Adolescent and Young Adult Program (AYA) providing supportive services to young cancer patients aged 15-39 in active treatment or post-therapy survivorship.
“After my diagnosis, I started chemotherapy right away at Methodist Children’s Hospital in San Antonio and was in and out of the hospital for six months,” Carlie recalls. “I had to withdraw from my junior year of high school during treatment, which was very difficult because school was so important to me, and I also didn’t want to be separated from my friends.” Although she attempted online classes initially, the side effects of chemotherapy made it too difficult to continue. “I was able to start online classes again in the summer and graduated on time in the top 5% of my high school class,” she adds.
With her cancer in remission, Carlie began her freshman year of college at Texas A&M University with regular follow-up visits to her pediatric oncologist at Methodist Children’s Hospital, Dr. Jaime Estrada, every six to eight months. But an upper respiratory virus that lingered from winter break into the spring was the first sign that Carlie’s health was declining. “In the back of my mind, I thought this could be the cancer coming back, and I didn’t want to deal with it again,” she says. When bloodwork confirmed that the AML had returned, Carlie remembers, “I found my parents outside crying right after they received the call. It was a difficult time for them and also my younger brother, Hud, who was 11 at the time.”
Because she experienced a recurrence of AML, Carlie was told a bone marrow transplant would improve her chances of achieving remission. “It was scary to think about undergoing such an extensive procedure. We had a family friend who had a bone marrow transplant, so I was somewhat familiar with all the steps involved,” Carlie says. She began chemotherapy immediately in preparation for the transplant, which was performed at Methodist Children’s Hospital in May 2018.
Carlie says one of the most difficult aspects of her cancer reoccurrence was leaving college for an extended period. “Cancer takes an emotional toll. Everyone went back to college after spring break, but I had to stay home for chemo treatments,” she says. “I’m blessed with an amazing group of friends who are supportive and kind – they visited me and sent care packages. Still, it was hard to see them on social media doing things I wanted to do.”
After recovering at home last fall while taking online classes, Carlie returned to the Texas A&M campus during spring semester of this year and will receive her Aggie ring in the fall.
With her cancer now in full remission, Carlie has turned her attention to helping other young patients and survivors through sharing her experiences battling cancer. “When Dr. Estrada reached out to ask if I would consider serving on the board of a new AYA he was starting in San Antonio, I knew it would be a great opportunity to connect with and help other young people,” she says. Located at children’s hospitals and cancer centers across the country, AYA cancer programs provide up-to-date medical care as well as comprehensive social and emotional support for young patients aged 15-39 with services that focus on psychosocial and supportive care, fertility preservation, genetic testing, and survivorship support.
At the first board meeting of the AYA Foundation San Antonio, Carlie says she spoke out about not having been aware of the availability of certain services when she was going through cancer treatment. “It’s such a whirlwind of activity after you receive a cancer diagnosis – treatment starts right away, and that’s the main focus.” Yet, she stresses that there are other, equally important supportive services that cancer patients need. “We want other young cancer patients to be aware of the range of services available to them,” she adds. Carlie says the primary issue of which she wants to increase awareness is fertility preservation. “Many of the treatments you undergo as a cancer patient diminish or eliminate your fertility,” she explains, adding that she has been diagnosed with premature ovarian insufficiency due the cancer treatments she received, which reduces the chances of having children in the future. “If my parents had been given information about the option of freezing some of my eggs prior to treatment, they would have done it.” A complicating factor is that these fertility preservation procedures require at least two weeks before the eggs can be harvested, and treatments for most leukemias must be started right away.
Carlie says another important issue that the AYA Foundation is striving to address is helping cancer patients and their families with the cost of living expenses during treatment. “AYA programs support a range of age groups from teens to young adults – some people are in school and some have families,” she explains. “It’s not possible to work full time and take care of someone in the hospital. Also, childcare, in combination with medical bills, is very costly. Our organization hopes to be able to help families with some of these living expenses to make treatment less stressful.” She also says the opportunities that AYA programs provide for patients and survivors to connect through events and social gatherings are deeply meaningful. “You share a connection that most people don’t understand who haven’t experienced a cancer diagnosis. But that connection and support from others who have shared the experience is needed for healing and moving forward.”