Will and Lacey Smith of Jacksonville discovered exactly what they could handle and how strong they truly were as they spent much of early 2013 at Wolfson Children’s Hospital. They had been spending their time between the oncology floor, where their then-2-year-old son, Liam, was being treated for leukemia, and the Level IV Neonatal ICU, with their twin girls, who had been born prematurely at 33 weeks.
The first battle with cancer
Liam, now 9, was diagnosed with acute lymphoblastic leukemia (ALL) two weeks before twins Emma and Ella, now 6, were born. Acute lymphoblastic leukemia is the most common type of childhood cancer, which typically peaks in children ages 3 to 5.
“Liam had a big swollen lymph node on his neck that was the size of a ping pong ball,” Will shared. “He complained almost to the point of tears when he fell down because his joints hurt so badly. So we brought him to his pediatrician and they ran a very basic blood test and could immediately tell something was wrong.”
He brought Liam downtown to Wolfson Children’s Hospital’s main Emergency Center, where a more extensive blood test revealed the leukemia diagnosis.
“It was a gut punch,” said Smith. “There are a lot of things someone can tell you about your kid that you can get through or rationalize in your head. But when someone tells you your child has cancer, your mind just starts racing to every possibility, and it goes to the worst things first.”
Liam was immediately admitted to Wolfson Children’s to begin treatment. And before they were able to go home, twins Emma and Ella spent approximately six weeks in the NICU.
As the girls got older, Liam underwent three years of treatment for his leukemia. But as he neared the finish line, the Smith family found themselves starting over.
Emma and Ella were also 2 years old when their parents noticed concerning symptoms in Emma that were oddly similar to what they saw in Liam.
“Sure enough, she was diagnosed with the exact same leukemia Liam was being treated for,” Smith said.
Scott Bradfield, MD, chief of pediatric hematology/oncology at Wolfson Children’s Hospital and associate division chief of hematology/oncology for Nemours Children’s Specialty Care, Jacksonville, had already gotten to know the Smith family throughout Liam’s treatment.
“We spend lots of stressful times with these families and get to know them very well, which made it even harder when they came back with Emma,” Dr. Bradfield said. “It was painful in a different way. We almost always are meeting families for the first time when we’re telling them that their child has cancer, but to do it with a family that you have been through this with before and know that it’s the same thing again, it’s hard.”
While about 40 children out of every million will be diagnosed with ALL, according to Dr. Bradfield, the risk is two-to-four times higher for siblings of a child with a diagnosis and significantly higher for identical twins.
“I think there was a dread among the family and the providers that Ella was going to get it, too,” Dr. Bradfield said.
The family and care team made the decision to have the other twin Ella undergo routine blood testing.
“Every week we would go, and Emma and Liam would get infusions while Ella got her blood checked to make sure there was no sign of leukemia,” Smith said.
A family victory
Liam concluded his treatment in 2016 and Emma completed her treatment, which lasted about two-and-a-half years, in September of 2017. Both have since been cancer-free but receive regular blood tests to ensure it hasn’t returned.
Dr. Bradfield said at this point, the kids have a 92% chance the cancer will never come back. After five years in remission with no return, they will be considered cured. Fortunately, Ella’s blood tests have never shown any signs of leukemia. Once she turned 6, her risk returned to normal for siblings of children previously diagnosed, Dr. Bradfield said.
“Even though Ella never got leukemia, she went through everything with us,” Smith said. “She told me recently how proud she was that Emma and Liam didn’t have cancer anymore.”
Dr. Bradfield said the Smith family’s cases reveal that there’s more childhood cancer research that needs to be done revolving around whether leukemia has a genetic component.
“For all of the children we treat for cancer, this is a story that really stands out in my memory,” Dr. Bradfield said.
Today, Liam loves to play football while Emma and Ella are excited to try dance and gymnastics.
“This whole experience has made them extremely close,” Smith said. “I do feel like they got robbed of some time in their childhood, though, and we’re looking forward to making that up.”
All three Smith children have been chosen as part of the Wolfson 55 for this year’s Wolfson Children’s Challenge. The 2020 Wolfson Children’s Challenge will take place on Saturday, January 25, 2020. Register now for the 55K Ultra Marathon, Ultra Marathon Relay, 30K Individual Run or 1-mile Fun Run!
A cancer diagnosis can seem insurmountable to any family, but Wolfson Children’s Hospital has a comprehensive team of experts to help guide you through the process. For more information, call the Wolfson Children’s Cancer Center at 904.697.3600.