Rick Shadyac, president and CEO of ALSAC, with families — Rick Shadyac (far right), president and CEO of ALSAC, with St. Jude families

Caring for St. Jude families

As Mother's Day approaches, ALSAC President and CEO Richard C. Shadyac Jr. reflects on what it's like for patients and their families while they undergo treatment at St. Jude.

Merri and Stephen were high school sweethearts, still in college, when they married at 21 years old. A year later, they found they were expecting their first child, Josiah. This was the beginning of a family, the start of a story filled with love and dreams and hope.

But at 7 months old, Josiah was diagnosed with glio astrocytoma, a brain tumor. It was Mother’s Day weekend. “My first with my own baby to hold,” Merri said.

Can you imagine? As a father, I can’t.

patient Josiah with his mom and sister — Merri lerned that her fist child, Josiah, had glio astrocytoma at just 7 months old.

Merri said, “I’ve experienced a breaking of my heart and a breaking of my original dreams for my child.”

Their story quickly became one of unimaginable sickness and a heartbreaking diagnosis but still, at its essence, one of hope. With the help of millions of supporters like you, St. Jude is helping families reimagine and rewrite their stories every day. Ones rich with milestones and memories.

In 10 years of being in and around St. Jude,” Merri said, “it never ceases to amaze me the lengths they will go to treat the whole child, to care for the whole family however they can.

Merri, mom of St. Jude patient Josiah

At St. Jude, no family ever receives a bill for anything so they can concentrate on what truly matters — helping their child during some of the darkest days they’ll ever know. With family-centered focus, caregivers and families work as partners to better meet the needs of kids. In-patient rooms are designed with mom and dad’s comfort in mind and long-term housing facilities — Tri-Delta Place, Ronald McDonald House and Target House — feature spaces for families to gather. Networks of support bloom in these areas.

“There were families like mine,” Merri said, “nurses who listened to me, therapists for Josiah who saw and made much of every tiny gain he made.”

Josiah holding a sign — On Mother's Day weekend, Josiah was diagnosed with glio astrocytoma, a brain tumor.

Parents of sick kids can feel isolated from their communities as they go through something so few experience. As St. Jude welcomes patients from all 50 states and around the world, it becomes a community — a family — in itself.

Merri was blessed to become close with three women whose sons were in the same clinic as Josiah. They shared insecurities, fears, dreams and nightmares. Unofficially, they were mentoring each other, and later, when the official St. Jude Parent Mentor Program was established, Merri joined. “That program has been the biggest blessing in my life,” she said. “No penny is wasted on these family-centered care programs.”

Parents of St. Jude patients sit and talk in the hospital — The St. Jude Parent Mentor Program matches parents of past patients with families who are walking through the doors of St. Jude for the first time.

ALSAC (the fundraising and awareness organization for St. Jude) and St. Jude were founded by Danny Thomas with family in mind. Shortly after St. Jude opened in 1962, Danny’s wife, Rose Marie, wrote for a newspaper op-ed, “Danny was born into a home with few material possessions, but one that had a wealth of love and mercy.”

Love and mercy.

Merri and Stephen have deep reserves of love — Josiah is 10 years old and in the third grade; he has a brother and sister. This still-young family saw mercy from the world’s top doctors, researchers and caregivers. They’ve felt, deeply, love and mercy from fellow parents, and from our millions of donors and volunteers around the world.

“Every time I step foot on campus, it feels like an unplanned family reunion in some respects,” Merri said. “There will be embraces and smiles, and there will also be sudden tears for the ones I wish I could still hug in those hallways.”

Mother’s Day is just a couple of weeks away. I wish the best for Merri and her family, and for all the St. Jude moms, as they rewrite their stories of hope.

Help our families focus on their sick child, not medical bills.

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