Li-Fraumeni syndrome caregiver: “Cancer can’t have every day”

Cancer could have easily taken over the Ferguson family by now.

Three of the family members – wife/mom Sandy and daughters Alyssa and Jenna – have Li-Fraumeni syndrome. This rare genetic condition puts them at high risk to develop multiple types of cancer throughout their lives. Sandy is a two-time breast cancer survivor, and Alyssa, 14, is currently undergoing treatment for medulloblastoma, a form of brain cancer. Jenna, 10, undergoes frequent cancer screening at MD Anderson.

Sandy was screened for Li-Fraumeni syndrome around 1990 after some distant relatives were diagnosed with it. Both daughters got tested for the syndrome just a few months before Alyssa's medulloblastoma diagnosis in January 2014.

After coming to MD Anderson for Alyssa's care, the Fergusons and their doctors chose a treatment plan that started with surgery, followed by proton therapy and then chemotherapy. She has had several recurrences since these initial treatments and is currently on a clinical trial.

Strength through faith

Worries about the future can be “overwhelming,” says husband/father Scott, but the Fergusons work hard to keep cancer from dominating their lives. “We want to live life fully. Cancer can’t have every day, and that’s our choice,” Scott says. “Cancer may have the days we’re in the hospital, but it can’t have every day.”

Their faith gives them the strength and peace to maintain this attitude. “It’s what sustains us and is the biggest part of our story,” Scott says. And by practicing their faith, specifically by helping others, the family is able to stay balanced.

“Everyone’s focusing on you, everyone’s helping you, but you need to serve and help others,” Scott says. “Keep your eyes open for opportunities so that you don’t get self-absorbed or taken over by the cancer.”

The Fergusons have practiced this throughout their cancer journey. They’ve welcomed other patients and families to their house for home-cooked meals. Once, they invited a young adult patient with no friends or family in the area to stay with them during treatment.

A wish to help others

Alyssa herself has embraced this attitude far more than anyone could expect. Last year, she was granted a wish from the Make-A-Wish Foundation. She could have met someone famous or taken a dream vacation. Instead, she had a well dug in an African village, giving its people clean drinking water for the first time.

Alyssa’s wish was inspired by a contemporary Christian pop song encouraging people to help those who are suffering. As Alyssa told Scott, “I was thinking about that song and decided I ought to do something with my wish. I only got it because I got sick, so I’m going to do something with it.”

Choosing joy

On top of helping others, the Fergusons make a point of enjoying life in spite of Li-Fraumeni syndrome and cancer. Earlier this year, Alyssa had a surgery scheduled for the day after the Super Bowl, an event the Fergusons have celebrated with the same group of friends since before the children were born. Instead of missing the party, the family ended up hosting.

“The party was supposed to be in a different city, so we told everyone we couldn’t come because Alyssa was having surgery the next morning,” Scott says. “But our friends said they were coming to us. We said, ‘Bring it.’”

This attitude has helped the Fergusons keep cancer from dominating their lives, even though they know Li-Fraumeni syndrome means the next cancer diagnosis could be right around the corner. “We try really hard not to stress about what might come because that robs your joy of today,” Scott says. “Today, we can choose joy.”