Uplift Blog

Hope for Siblings with Li-Fraumeni Syndrome

Hope after Li-Fraumeni Syndrome Diagnosis

“You’re only thinking about the medical things—you’re overwhelmed and exhausted and worried, and you don’t have the energy to think about how people can help and in what ways. The people who took the initiative to figure that out for us were enormous blessings.” – Ann R.

It’s almost unimaginable. Not one, but two, of Ann’s four children were diagnosed with cancer in the same year. That’s when they discovered that her son Brent and daughter Lauren both have what’s called Li-Fraumeni Syndrome, a genetic mutation that predisposes them to all forms of cancer.

Brent was diagnosed with bone cancer in 2011. Lauren was diagnosed with brain cancer shortly thereafter.

The thought of trying to keep everyone updated on both Brent and Lauren’s conditions was overwhelming, especially as part of Brent’s treatment involved spending months in New York, 500 miles away from their home in Ohio.

Helping Hands

CaringBridge, Ann says, has allowed her to stay connected to family and friends, as well as provide a way for members of her community to support her.

“People who know my kids will come up to me and say, ‘I follow your CaringBridge and want you to know I’m keeping your family in my prayers.’ It’s quite touching and humbling, and has been encouraging.”

As Ann and her husband transitioned into being full-time parents and caregivers, friends and family members organized schedules for bringing meals, offering rides and babysitting their youngest, who was just 2 years old at the time of Brent’s diagnosis.

“It was so meaningful to have people thinking about things for us,” Ann says. “You’re only thinking about the medical things—you’re overwhelmed and exhausted and worried, and you don’t have the energy to think about how people can help and in what ways. The people who took the initiative to figure that out for us were enormous blessings.”

Keeping Hope

In February 2014, Ann found out Brent’s cancer had come back in a new form. He will have to have start another round of surgery and treatments. He’s 14 now, and has made it through almost an entire school year cancer-free. Ann says she’s hopeful the process won’t be as difficult as last time. She knows she’ll feel the love and encouragement of family and friends through it all.

Offer Support to Families Like Ann’s

Going through any health journey can have its ups and downs–but it is always important to keep up hope. Through a CaringBridge website, families can feel the love and support of their community. If someone in your life is going through a health event of any kind, please consider starting a CaringBridge website for them.

About the Author:

Ellen Burkhardt is a freelance writer and editor living in Minneapolis.

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  • By karen Sieg

    I have done a couple different people on this site as a prayer partner. One I never met before he passed and the other one I met about 5 months ago when she got moved to our local hospital. I can do praying and encouraging notes from my home. I am a stay home mom of 4 grown children and now 4 grand children.