Lilly’s Brave Journey: Overcoming Acute Lymphoblastic Leukemia with Hope and Healing at CHRISTUS Children’s
In February 2018, 9-year-old Lilly Ledesma came down with a fever and was soon diagnosed with the flu. But as her condition rapidly declined, her parents grew increasingly concerned. What they initially thought was a routine illness turned out to be something far more serious: acute lymphoblastic leukemia, known as ALL.
“We were blindsided,” recalled Lilly’s mom, Fara. “Hindsight is 20/20, so looking back, we can remember times when she would mention that her knees or legs hurt, but we thought it was just growing pains or from her cheerleading. That Monday night, when they sat me and my husband down to tell us her diagnosis, we just started crying. There’s no way to describe the moment when your world turns upside down.”
Acute lymphoblastic leukemia is the most common type of childhood cancer. It causes the body to produce too many immature white blood cells, which interfere with the normal production of healthy cells and weaken the immune system.
Within a few hours, Lilly was admitted to the oncology floor at CHRISTUS Children’s. Her care team gathered in her room as Fara and her husband Christopher told Lilly about her diagnosis.
“Christopher and I had always been transparent and honest with our children,” Fara explained. “It broke our heart when Lilly’s first question was, ‘Am I going to die?’ I pointed to the doctors in the room and said, ‘It’s their job to keep you healthy, and our job to keep you happy.’”
From ALL Diagnosis to Remission
Lilly began treatment immediately, starting with the first phase of chemotherapy known as induction. After four weeks of treatment, her doctors shared that she was in remission, with no detectable leukemia cells.
“Many people assume that you aren’t in remission until the end of chemotherapy, but that’s not the case with ALL,” explained Dr. Nadia Cheek, a pediatric hematology oncologist and program director of SHINE On!, CHRISTUS Children’s Survivorship Program. “The goal of the induction phase is to induce remission, and the rest of the treatment is to eliminate any remaining cells to maintain the remission.”
In total, Lilly would complete several courses of chemo with breaks in between for recovery time. Her journey included inpatient and outpatient chemo sessions and multiple inpatient stays during roughly two years of therapy. Through it all, CHRISTUS Children’s team was a source of constant support.
“I remember one time when they had to draw blood in the middle of the night, but it wasn’t coming out,” Lilly said. “They had me raise my arm, told me a joke to make me laugh and the tube started filling up. Another night, a nurse squirted me with saline, and it made me giggle. Everyone would go out of their way to make me smile.”
During her hospital stay, Lilly received visits from the Child Life team at CHRISTUS Children’s every other day. She fondly recalls visits with a therapy dog that would get up on her bed so she could snuggle with him. She also enjoyed the crafts and games her child life specialist provided.
Balancing Childhood, Chemotherapy and Hope
Those therapeutic visits became especially helpful during Lilly’s phase of treatment called interim maintenance 2, when she received a chemotherapy agent called Methotrexate. One of the side effects was mucositis, which caused painful sores in Lilly’s mouth and on her lips. The pain was so severe that Lilly couldn’t talk or eat. This required admission to the hospital for IV fluids, pain medication and IV nutrition (TPN).
As Fara worked to manage Lilly’s physical and emotional pain, she also worried about Madison, Lilly’s twin sister.
“To this day, I struggle with guilt about the time I missed with Maddie,” Fara explained. “But, we’ve had many deep conversations, and Maddie reassures me that she knew then and now that we did what we had to do as parents. She was so gracious even as a young child, letting us focus on Lilly.”
Right after Lilly’s diagnosis, Fara and Christopher worried if Maddie might also be at risk for developing ALL.
“Lilly and Maddie are fraternal twins, so Maddie’s risk is the same as any other child,” explained Dr. Cheek. “Most childhood leukemias are sporadic, not hereditary.”
To balance the big emotions and hard times, Fara and Christopher looked for ways to bring fun to their lives. When Lilly had to fast before an appointment, they would watch food shows to get excited about what she would eat afterwards – churros from a Mexican fast-food chain were a favorite. To keep germs at bay, the family got a pool in their backyard. Since Lilly couldn’t spend a lot of time in the sun, she and Maddie would swim at night.
Another way Lilly found hope was thinking about life after treatment. Shortly after her diagnosis, Child Life specialists encouraged Lilly to begin imagining what she might ask for through the Make-A-Wish Foundation, which grants life-changing experiences to children with critical illnesses.
With that in mind, Lilly spent hours watching travel shows learning about international destinations because she knew she wanted to ask for a family vacation. She made a list of pros and cons for her top three destinations and specifically requested that her trip be after she completed treatment so that she could fully participate in the activities.
While Lilly entered remission in March 2018 following the induction phase of chemotherapy, she completed treatment in April 2020. A year later, in April 2021, the family was off on their Make-A-Wish trip to Hawaii – a long-awaited celebration of healing and hope.
“Lilly got to do everything she wanted and more – swimming with dolphins, ziplining, snorkeling,” Fara said. “I remember one afternoon when Christopher and I watched Lilly and Maddie play in the water. It was very emotional to see the girls be kids again, the way it should have been all along. While I wouldn’t wish childhood cancer on anyone, it did teach us to live life to the fullest and never take anything for granted.”
Thriving Beyond Cancer: Preparing for the Future
Today, Lilly is 17 and thriving. In April 2025, she celebrated five years since completing treatment by enjoying her favorite cake with her parents and sister. She’s now preparing to pursue a career in education and remains actively involved in several organizations that support children diagnosed with cancer.
Recently, Lilly’s sister Maddie helped organize a successful toy drive at their school benefiting the Child Life Department at CHRISTUS Children’s. From stuffed animals and board games to arts and crafts, they donated toys for all ages that will be used as birthday presents and “pick-me-ups” for children having tough days in the hospital.
As part of her journey beyond cancer, Lilly participates in SHINE On!, the childhood cancer survivorship program at CHRISTUS Children’s, which provides ongoing care and monitoring for childhood cancer survivors. The program helps identify and manage potential long-term effects of treatment. Through regular follow-ups, education and support, the program ensures that survivors like Lilly can thrive well into adulthood.
“As a survivorship specialist, I begin seeing patients after they complete treatment and their primary oncologist transitions them to the survivorship program,” Dr. Cheek explained. “Since Lilly was my patient from the beginning of her journey, she stayed my patient, which means I’ll continue to see her yearly and manage any long-term treatment side effects.”
The long-term side effects of chemotherapy can vary, but may include heart problems, hormonal imbalances, hearing loss, secondary cancers, learning and memory difficulties, and mental health challenges.
“Today’s treatment protocols for ALL are incredibly effective,” Dr. Cheek explained. “In the 1970s, the survival rate for children was just 10 to 20%. Today, it’s over 90%. That progress has made survivorship programs more essential than ever, offering long-term surveillance and management of treatment side effects so our patients can live their best, fullest lives.”
“Lilly’s risk of relapse is very low at this point, but it’s always in the back of our minds,” Fara explained. “I can see her wheels start to turn when we have an appointment coming up. It isn’t until Dr. Cheek calls with the results that Lilly can breathe again.”
“It’s always a wonderful moment when a child completes therapy, but I can’t emphasize enough that their journey doesn’t end there,” Dr. Cheek said. “Patients tend to stop coming as they get older because they’re doing well, but we want to stay plugged in and continue to help them. We continue to teach the kids about making the right choices to stay healthy, and that includes staying connected to their survivorship specialist.”
At CHRISTUS Children’s, no child or family walks the cancer journey alone. From diagnosis to survivorship, our pediatric oncology team provides compassionate and innovative care to every child. For more information about our pediatric oncology services at CHRISTUS Children’s, visit Pediatric Cancer & Blood Disorders in San Antonio | CHRISTUS Children's Hospital.
