Girl's cancer leaves Georgia family with questions about her siblings' risk

LAGRANGE, Ga. (FOX 5 Atlanta) - The dance-offs are back on in Kristin and Trevor Highland's LaGrange, Georgia, living room.
Their family is finally back in a groove,  four years after now 7-year-old Maylee, came down with what seemed at the time like a stomach bug.

"Of course, she had had stomach viruses before," Kristin Highland remembers.  But, this one just didn't go away."

The problem wasn't Maylee's stomach. 

It was her blood.

Within days, the Highlands were being told their 3-year-old had acute myeloid leukemia, or AML, a cancer of the blood and bone marrow.  

Maylee Highland would need months of intense chemotherapy at the Aflac Cancer and Blood Disorders Center at Children's Healthcare of Atlanta.  

"There is so much guilt, and there is so much shame," Kristin Highland says about her daughter's diagnosis.  "You're you're wondering, is it my fault that my child has cancer?  Is it my fault we're here?"
Maylee got through her the treatment and within 8 months went into remission.

But, in June of 2018, just as curls grew back, Maylee started to feel sick again.
So, they ran more tests, and returned to Children's to meet with Maylee's oncologist.

"He just kind of laid the papers on the table, and he looked, and he said, 'This is a relapse," Kristin Highland says.

Now, Maylee Highland needed a bone marrow transplant.
This time around, her cancer cells were tested, and the Highlands learned she carries a very rare hereditary genetic syndrome that predisposes her to developing leukemia.

But, if it was passed down through families, what did that mean for Maylee's little brothers 5-year old John Will and 2-year old Luke? 

The family came to see Bojana Pencheva, a genetic counselor at the Aflac Cancer and Blood Disorders Center of Children's, to figure out what to do next.
Kristin Highland wanted the boys to get tested, to see if they, too, could be at increased risk of leukemia.

"Bojana was like, 'Are you sure you want to know this information," Maylee Highland says.  "Because once you know this information, there is no taking it back."

Pencheva tries to get couples like the Highlands ready for what the tests might reveal.
"If we find out your other children are also have increased cancer risks, how do you think you would feel," Pencheva says she asks parents.  "How do you think you would react? How do you think you would cope with that information?"

In the end, both brothers were tested. Both carry the same genetic mutation as Maylee.
But, instead of being crushed, Kristin Highland felt empowered. Now, she says, she knew what they were up against.

"I was just happy to have answers," Highland says.  "I was happy to have direction."

The boys are now being carefully followed by the new Cancer Predisposition Program at Children's, which tracks children who don't have cancer, but may be at risk in the future. Kristin feels confident if her sons ever get do sick, they'll catch the cancer quickly.

"It felt like I was given power over the situation," she says.

Maylee Highland is now in remission again.  

And, while her parents know can't control the future, they're grateful for the life they have right now.