It was the summer after kindergarten and Sal should have been out on the block playing with his neighborhood pals. But the typically robust 6-year-old was fighting off one illness after another.
Initially, his pediatrician wasn't overly concerned. It seemed like a string of common childhood viruses. But Lisa's mommy radar was beeping because her young son was sick way too often.
"It felt like we were in and out of the doctor's office every week for strep throat or some other virus," she said. "When Sal started complaining that his legs and heart hurt and that he was having trouble breathing, I demanded a blood test."
Less than three hours after that fateful test Lisa and her husband Alex received the phone call that changed their lives.
"They said 'we've called ahead to the ER at Children's Plano. It's urgent that you get Sal there right away," she said.
Their son's white and red blood counts were dangerously low. Before the night was over, Sal had received four blood transfusions.
The Emergency Room team at Children's Health℠ Plano began a series of tests while gently explaining to Lisa and Alex that Sal would need to be transported to the Pauline Allen Gill Center for Cancer and Blood Disorders at Children's Health Dallas campus.
"It hit hard when they said we'd be going to the oncology floor," recalled Lisa. "The ER nurse kept talking but I didn't hear another word. I kept thinking 'wait, that means cancer, right? Does Sal have cancer?'"
The team at the Gill Center helped the shell-shocked family get settled in the Spider-Man-themed room and explained that Sal had all signs of standard-risk acute lymphoblastic leukemia (ALL), the most common type of childhood cancer. Test results confirmed the diagnosis and 48-hours later little Sal began the first of many intravenous chemotherapy treatments.
Leading cancer patients along their long road
While the word "cancer" strikes fear in the heart, the outlook for kids with ALL like Sal's is very good. Thanks to decades of research to improve treatments, nearly 90% of children with ALL have no sign of disease five years after treatment ends and are considered to be in long-term remission.
The journey to get there, however, is long and hard. Children with leukemia undergo six to eight months of intensive treatment in the hospital or clinic, followed by two to three years of maintenance treatment that includes many oral medications taken at home, explained Maria Bisceglia, ARNP, an advanced practice nurse who was Sal's primary provider during his three-year treatment. Providers like Bisceglia see cancer patients regularly throughout their treatment to check their blood counts, monitor their medications, and treat unrelated sicknesses or side effects from the cancer treatment.
"Maria was our anchor throughout Sal's treatment," said Lisa. "The rest of the team at Children's Health was amazing, too. They walk with families through their darkest days, and they rejoice with them during their happiest moments. It takes a special kind of person to do that."
Maria was our anchor throughout Sal’s treatment. The rest of the team at Children’s Health was amazing, too. They walk with families through their darkest days, and they rejoice with them during their happiest moments. It takes a special kind of person to do that.
Caring for the whole child, not just their disease
The medical needs of kids with cancer are complex. The Center for Cancer and Blood Disorders (CCBD) at Children's Health is one of the nation's largest childhood cancer centers and one of the best. Comprehensive cancer centers like CCBD offer the most current cancer treatments as well as services that support children and their families throughout their journey. These centers conduct laboratory research to better understand these diseases as well as clinical research to improve treatments and minimize the short- and long-term impact they have on children's lives.
The CCBD also has a robust psychosocial team that specializes in helping patients and their families adjust to cancer, its treatment, and whatever comes next. This multifaceted team includes pediatric psychologists, social workers, child life specialists, music therapists, spiritual services, school services, and pediatric neuropsychologists. Various specialists from the team meet with each family shortly after diagnosis to identify the best ways to support them.
"The services provided are tailored to the patient and their unique situation, and often change over time to meet their needs," said pediatric psychologist Jenna Oppenheim, Psy.D, ABPP. "Everyone on our psychosocial team shares the goal of helping families cope with the impact of this life changing diagnosis."
Music therapy and visits to the playroom buoyed Sal's spirits while he was in the hospital. Working with Dr. Oppenheim helped him adjust to life with cancer. But his absolute favorite was the Child Life team and he looked forward to seeing them at every visit.
"Child life specialists just bring the fun," said Lisa. "For a kid like Sal, who loves to play and joke, they were one of the best things about being at the hospital.
The child life specialists would bring UNO cards and games to pass the time. Sometimes they just come by to chat. But a bigger purpose lies just beneath the levity – child life specialists are experts in helping kids and their families understand what is happening and how to cope. That can mean explaining a diagnosis or solving a practical issue like how to swallow a pill. It can also mean demonstrating a new or painful medical procedure on a stuffed toy so a patient knows what to expect.
"Cancer treatment has a lot of scary moments. The child life specialists can really pivot the mood and bring some joy to the difficulty," said Lisa. "When Sal was anxious about a lumbar puncture or something, they would come by with a joke book because they knew how much he loves jokes. Their demeanor and the way they explained things made the hard stuff easier to bear."
Cancer throws another curve at Sal's family
Once Sal entered the maintenance phase of his treatment, his family hoped that life might settle down. Instead, it threw another unexpected curveball: Sal's dad Alex was diagnosed with pancreatic cancer in early 2020, just before the onset of the COVID‑19 pandemic.
"I remember when we were waiting for Alex's final diagnosis," Bisceglia said. "It was such a relief to learn that it was a type of neuroendocrine tumor that has a good prognosis."
Alex's experience with cancer was a sharp contrast to the coordinated care Sal received at the CCBD.
One of the things I love about Children's Health is the way they worked together to address the entire spectrum of Sal's needs. They treated his cancer, they treated the way his treatment impacted his body, and they treated his overall physical and mental wellbeing. They even provided things for me and Alex because they know that when a child has cancer it affects the entire family. Sal's team knew what to do, and they knew who to refer to at the right time.
"One of the things I love about Children's Health is the way they worked together to address the entire spectrum of Sal's needs. They treated his cancer, they treated the way his treatment impacted his body, and they treated his overall physical and mental wellbeing. They even provided things for me and Alex because they know that when a child has cancer it affects the entire family," said Lisa. "Sal's team knew what to do, and they knew who to refer to at the right time."
Alex's experience, by comparison, felt segmented and siloed. Each of his specialists was from a different practice. Alex received recommendations from each of them and then it was up to him and Lisa to connect the dots.
"With Alex, we were the glue that coordinated his care. With Sal, Children's Health was our glue," Lisa said.
Each day has enough trouble of its own
Today, Sal is a lively, thriving fifth grader who recently joined a basketball team and generally keeps his parents on their toes. He and his dad are both doing well and adjusting to life in long-term remission. The proverb "Do not worry about tomorrow for each day has enough trouble of its own" pops into Lisa's mind when she reflects on the last four years.
"We were in survival mode," she said. "So many things fade to the background when your child is fighting cancer. You focus on what is right in front of you. Sometimes that can mean getting through the next hour or even just the next chemo injection. At Children's Health, I felt safe to be in the moment with Sal because I knew our care team had their eyes on our tomorrows.
"I believe that victory is ahead and that one day cancer will be defeated. Right now, the journey with cancer is still hard and filled with struggle. The doctors and nurses at Children's Health were always there for us, always rooting for us. They always saw us through the lens of victory. And that gave us the encouragement to keep pushing forward."
The Pauline Allen Gill Center for Cancer and Blood Disorders at Children's Health is a world-class pediatric treatment center recognized nationally for exceptional clinical care, leadership in children's cancer research and academic excellence. Learn more about our programs and services.