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KIDS FIGHT: A brotherly battle

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Family faced with two childhood cancer diagnoses a few years apart

By Kacie Goode

The first time Billie Jackson was told her son had cancer was on Sept. 21, 2012. Trevor wanted to go to the park and play.

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Shortly after arriving, Billie noticed her son started walking in an odd way. Maybe he was just goofing around. But when her often-rambunctious toddler sat down and said he wanted to go home, she knew something was wrong.

Billie decided to take her son to the hospital. She wondered if he was having an issue with his blood sugar, and remembered he had a headache that morning, too. Then Trevor began losing consciousness on the way to the emergency room.

It took only about 20 minutes of tests and scans for the doctors to find the tumor. At just 4 years old, Trevor was diagnosed with medulloblastoma. Brain cancer.

He was immediately admitted to the PICU at Kosair — now Norton — the children’s hospital in Louisville. While the news of brain cancer was crushing, a scan revealed that the cancer had been caught early and had not spread to anywhere else in the boy’s body.

A 19-and-a-half-hour brain surgery removed the tumor in its entirety, and Trevor began six weeks of radiation and 18 months of chemotherapy.

It would be OK. Trevor was going to beat this.

Deja vu

The second time Billie Jackson was told her son had cancer was on Dec. 21, 2016.

It was a day meant for celebration as her son Trevor was at Norton Children’s Hospital for a remission scan following his diagnosis and tumor retraction.

“It was a big deal,” Billie recalled. “That’s when they can tell you, ‘You can consider him cured.’” And the scan showed what they were hoping. Trevor was in the clear.

The earth-shattering news that day didn’t come from Trevor’s appointment, but from Gage’s.

The same day Trevor, now 9, was getting his scan, his 8-year-old brother Gage was due for a routine pediatric checkup.

A few days before the visit, Gage had been acting a bit sluggish, his mom recalled, but it’s not unusual for children to become ill during the winter months. The doctors took blood and Billie was given the OK to take Trevor to his appointment. They would call if anything came back.

As Trevor’s scan was beginning, Billie received a call from Gage’s doctor saying she needed to get her youngest son to Louisville as well.

Once at the children’s hospital, doctors ran their own tests to confirm what the local doctors had suspected. Gage had acute lymphoblastic leukemia.

“Again. A re-run. Deja vu,” Billie said. “They sat us down and told us we would be going to the seventh floor.”

That day, Gage began the first part of a three-year chemotherapy treatment.

By the time Gage completes his treatment, the family will have battled childhood cancer for eight years.

“It is the absolute most helpless feeling,” Billie said of what it is like as a parent to be told her child has cancer. “You want to take it all away. You want to fix it.”

To hear that news not once, but twice left her in utter disbelief, but also with a fear of both the known and unknown.

“At that point, you’ve lived it; you’ve been through it with one child,” she said. And while she’d tried to prepare herself to comprehend Trevor’s diagnosis, “You don’t prepare your mind for another child.”

It’s uncommon, but it happens

Ashok Raj, M.D., is a pediatric hematologist-oncologist with University of Louisville Physicians and the Norton Children’s Cancer Institute. Raj has been involved in treatment for both Trevor and Gage.

“Childhood cancers in general are not really common cancers, but in siblings, it is definitely uncommon,” Raj said, though he has seen it happen.

While researchers have not necessarily seen an increase in certain types of pediatric cancer recently, he said, the Centers for Disease Control and Prevention have noted an overall improvement in survival rates, particularly in Gage’s type of leukemia, which has rates approaching 90 percent.

“We still have a lot of work to do in the field of brain cancer in terms of survival rates,” he said, adding that brain cancer is the leading cause of cancer-related death among children.

A different battle

While Gage and Trevor share an oncologist and have been helped by many of the same hospital staff, their battles are different.

When it came to Trevor’s treatment, radiation was difficult, because he had to be sedated nearly every day for a week.

“He was only 4, and they had to make sure he stayed completely still,” Billie said. But the chemo was worse. “He would get sick and be in the hospital for seven to 10 days at a time.” Taking the treatment every six weeks.

During his last phase of chemotherapy, Trevor developed an infection in his intestines, causing him to become so sick and his immune system compromised that he was unable to celebrate his birthday, Christmas and New Year’s.

“That was probably the worst part of his treatment altogether,” Billie said.

Gage’s initial treatments were also rough, and the 8-year-old also suffered an infection and later an ulcer about three weeks in, which required emergency surgery.

The first three months of treatment are horrible, Billie said, and Gage had to be monitored very closely.

The boys’ types of treatment have also differed. Trevor was required to take in-patient chemo for 18 months, staying at the hospital for two nights at a time. For Gage, he is able to do all of his chemotherapy at a clinic and return home the same day. After eight months of injections, which should occur around August, Gage will be able to start taking treatment via pills at home for the remaining two years of treatment.

“That’s not something I was expecting. I was used to Trevor’s treatment and being in and out of the hospital,” Billie said. “Come August, life will go somewhat back to normal.”

Despite having two children experiencing pediatric cancer, Billie said her family still feels blessed because the prognosis could have been worse.

Trevor’s medulloblastoma was diagnosed early and had not spread, which increased his survival rate tremendously, especially since this type of tumor in younger children tends to be more aggressive.

For Gage’s type of leukemia, doctors perform a bone marrow biopsy and spinal tap at the time of diagnosis. They do the tests again after 28 days and again after three months. Gage hit remission by day 28.

“His bone marrow was completely clear. Everything was clear,” Billie said.

She said support from friends, the hospital and prayer have helped the family navigate this difficult time.

Some of the biggest support has come from her husband, Justin Jackson, Trevor and siblings, 7-year-old Carley Jackson and 9-year-old Derek Jackson.

Because Gage was 8 at the time of his diagnosis and could comprehend more than a 4-year-old, Billie struggled with how much information she should tell him and the other children. But she remembers getting the official diagnosis and informing the kids.

“When we came home, we sat all three other kids down at the table and told them. Trevor looked at me and said, ‘Oh, Mama, he’s going to be OK,’” she recalled. “That, from a 9-year-old, was more reassuring to me than any doctor could be.”

Trevor has even helped Gage complete his submission to the Make A Wish Foundation. Gage wants to take an RV to Florida, visit Lego Land and swim with dolphins.

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