Thomas Carley, now 11, was diagnosed with T-cell acute lymphoblastic leukemia in early December 2020.
Providing support and hope for the whole family
As he looked over the top of his “Candy Land” milkshake, 11-year-old Thomas Carley ate the purple rock candy before moving on to the blue cotton candy, rainbow sprinkles, whipped cream and vanilla milkshake — all of which he finished in less than 15 minutes. After more than a year of online learning, Thomas was on his way home from school, his third week back in the classroom after being diagnosed with T-cell acute lymphoblastic leukemia in December 2020.
Since he was adjusting to the resumed in-person routine, his mom, Suzanne, thought Thomas would be more talkative if we met in person – and over a sugar-laden treat. As this year’s Anthem LemonAid ambassador, Thomas will help promote the event, visit area lemonade stands and encourage others to support the hospital.
“I decided to participate because I wanted to help people like me who have cancer,” said Thomas, who quickly warmed up to the camera during his LemonAid photo shoot this spring.
A December surprise
“Before his diagnosis, Thomas had always been a healthy kid,” said Suzanne. “We did not see this coming. His diagnosis came completely out of left field.”
In fact when Suzanne took Thomas to the pediatrician on December 13, 2020, it was for a rash. Although he also had some bruising, Suzanne and her husband, Sean, attributed that to Thomas being an active 10-year-old boy. Fortunately his pediatrician recognized Thomas’s symptoms as something more and conducted blood work, which showed low platelet levels and high white blood cell counts, both too extreme to measure on the pediatrician’s in-office machines.
Thomas, who was still wearing the Santa hat he’d worn to the pediatrician’s office, went directly CHoR’s emergency department, where team members completed more blood work and found Thomas’s platelet counts were seven (normal platelet levels are 200-250) and his white blood cell counts were 15 times higher than normal. On Sunday evening, Thomas was admitted to the inpatient unit. On Monday he received blood transfusions to raise his platelet levels and by Tuesday had received a port and his first dose of chemotherapy.
“The speed at which the team moved was head spinning,” said Suzanne. “They did not mess around.”
With two daughters at home and COVID restrictions limiting visitors, Suzanne and Sean took turns staying at the hospital. His older sister, Abby, and younger sister, Laurel, talked to him on FaceTime regularly.
“I promised him on day one that he would not be alone,” Suzanne recalled. “I can’t imagine how scary it would be as a kid to go through that, especially without mom or dad there.”
The family met Thomas’s doctor, Dr. Madhu Gowda, who offered information about Thomas’s diagnosis and spent time answering Sean and Suzanne’s questions.
“He let us know there’s no one right way to treat cancer,” said Sean. “He gave us a plan but told us that based on Thomas’s responses, we may have to modify plans. That gave us a great deal of comfort.”
Welcome support and distractions
During Thomas’s 11-day hospital stay, the child life team brought Christmas movies and cookie decorating kits to his room to provide fun, kid-focused distractions. He had fun surprising and squirting one of his favorite nurses with saline-filled syringes, including one especially tough battle that ended with the need to change wet clothes and sheets.
“Thomas thought it was the funniest thing ever,” Sean recalled of the “water battle.”
Support was also available for Sean and Suzanne, who said the nursing team often anticipated her needs before she did. Multiple cancer-focused community organizations including ASK, Connor’s Heroes, CJ’s Thumbs Up and Ronald McDonald House Charities of Richmond, offered assistance and activities, which continued after Thomas was discharged on Christmas Eve.
Although Thomas had to be readmitted to the hospital a couple times throughout 2021, he was able to continue outpatient treatment through the ASK Pediatric Hematology and Oncology clinic. During each clinic visit, Suzanne said Thomas would “track down [child life specialist] Katie Barber for Lego® sets” and then play Xbox and eat popsicles to pass the time during treatment. In October, he completed 10 months of chemotherapy and will continue taking an oral chemotherapy pill for two years.
“The clinic staff cheered me up when I didn’t want to be there,” Thomas recalled.
After Thomas’s diagnosis, Suzanne said, “ We did our research” and were amazed to discover the resources at CHoR. The couple was particularly impressed at the collaboration between CHoR physicians and oncologists at other top children’s hospitals across the country.
“Early on during Thomas’s treatment, one of the medications he was taking caused a blood clot,” Suzanne recalled. “Dr. Gowda collaborated with other doctors virtually to develop the best plan to move forward. As a parent, knowing that 12 brilliant minds from around the country came up with a plan for our son gave me a great deal of hope.”
In addition to the top notch medical care, Suzanne and Sean appreciated the empathy, support and optimism of everyone at the hospital.
“In a process where you don’t know much and hope is what you have to hold on to, elevating that was incredible,” said Suzanne.
A fifth grader at Collegiate School in Henrico County, Thomas is happy to be back at school where his favorite subject is math. He is taking squash lessons and enjoying many of the interests he developed during treatment including building with Legos (he said he has a Lego® City set up on three card tables at home), cooking, World War II history and online gaming with a flight simulator. Although his interest in cooking began during the early days of treatment to satisfy his increased appetite, he continues to enjoy making his specialties including fried and scrambled eggs, breakfast sandwiches, pancakes (with syrup in the batter) and grilled cheese sandwiches.
When asked what he would tell other kids going through cancer treatment, Thomas smiled and said, “Look at me. I’m fine now. You can do it too.”