'It was a gut punch'

How much can parents handle?

Jacksonville residents Will and Lacey Smith found out how much they could endure and how strong they were as they spent most of early 2013 inside Wolfson Children’s Hospital. They split 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 at just 33 weeks.

Round one with cancer

Liam, now 9, was diagnosed with acute lymphoblastic leukemia (ALL) just two weeks before twins Emma and Ella, now 6, were born. ALL is the most common type of childhood cancer, peaking 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 Smith said. “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.”

Smith brought Liam to Wolfson Children’s Hospital’s main Emergency Center downtown, 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 Wolfson Children’s to begin treatment. Twins Emma and Ella spent around six weeks in the NICU before they were able to go home.

As the twins grew up, Liam continued what ended up being three years of treatment for his leukemia. But as he was nearing the finishing line, the Smith family was about to start all over.

Round two

Emma and Ella were also 2 years old when Will and Lacey started to notice some concerning symptoms in Emma that were eerily similar to what they had seen 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 Health, Jacksonville, had already gotten to know the Smith family through Liam’s course of 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 per every million will be diagnosed with ALL, according to Dr. Bradfield, the risk is two-to-four times higher for siblings of a child who has been diagnosed. For identical twins, the risk is markedly higher.

“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 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.

Victory comes in threes

Liam completed his treatment in 2016 and Emma completed her treatment, which lasted about two-and-a-half years, in September of 2017. Both have been cancer-free ever since, but return for regular blood tests to make sure it hasn’t come back.

Dr. Bradfield said at this point, the kids have a 92% chance the cancer will never return. After five years with no sign of cancer, 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 show that there’s more childhood cancer research that needs to be done revolving around whether there is a genetic component to leukemia.

“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 enjoys playing football while Emma and Ella are looking forward to trying 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.”

On January 25, 2020, all three Smith children received medals as part of the Wolfson 55 - 55 children chosen to represent the wide range of specialties provided at Wolfson Children's Hospital - for the 2020 Wolfson Children’s Challenge. The Wolfson Children's Challenge is an annual fundraising event.

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.