St. Jude came too late for her little sister but Kansas woman holds it dear

HAYS, Kansas — When Linn Ann Huntington set out on her bucket-list trip, from her Kansas college town near the exact geographic center of the contiguous U.S., it was just days before the Fourth of July.

A journalism professor at Fort Hays State University, named for the old military outpost on the edge of what was once the U.S. frontier, Linn Ann’s ultimate destination that summer of 2006 was Memphis and St. Jude Children’s Research Hospital.

It was a trip she had in many ways imagined for most of her life, one that as a young girl she had most fervently hoped her little sister Susan would one day be able to make.

“Susan got sick in 1960 and we soon began hearing about a children’s hospital Danny Thomas was going to open in Memphis,” Linn Ann says now. “Oh, how we prayed she would live long enough to go to St. Jude.

“Looking back now, I guess it’s hard to know if she would even have survived the transfer from Tulsa.”

Linn Ann had become a supporter before the research hospital even opened in 1962, putting away nickels her father gave her for the vending machine at the Tulsa hospital where her sister was once treated for acute lymphoblastic leukemia (ALL).

At the time, the survival rate in the U.S. for ALL, the most common form of childhood cancer, was 4 percent.

She had graduated from piggy bank supporter to member of a service sorority, Epsilon Sigma Alpha (ESA), that put St. Jude at the center of its philanthropic endeavors. She knew survival rates for ALL and other awful diseases of childhood had risen steadily, helped by research and treatments invented at St. Jude.

When Linn Ann’s husband, Donald, was still alive, they had decided to put together her bucket list of places far from their Kansas home she intended to experience in her lifetime.

“And at the very top was St. Jude,” Linn Ann says. “After all that time, after all those years, I felt called to visit.”

But her husband had died in 2005, just a few months before her mother passed away.

“After those horrid few months, I just decided I would cross something off my bucket list, something to lift my spirits,” Linn Ann says. “Going to St. Jude was one of the first things I thought of. I felt like I needed to go see this place I had so long envisioned.”

As much as modern medicine and scientific progress may blur memories of what a cancer diagnosis meant for a child before St. Jude opened in 1962, those of Linn Ann’s generation remember.

For some, it may have been an elementary-school classmate, in the desk next to them one day and then, after becoming sick, never returning to school again.

For 7-year-old Linn Ann Elston growing up in Oklahoma, it was the 3-year-old little sister she adored, Susan. And it began one day when the family noticed a sore on the inside of her leg.

It kept growing larger and Susan’s limp grew more noticeable.

Her mother, Clarice, feared it was polio, a disease one of Linn Ann's cousins had contracted. But bloodwork came back with another, even more ominous answer.

“It was cancer of the blood which at the time was far worse than even polio,” Linn Ann says. “Polio could be treated but cancer was a death knell. And even though leukemia wasn’t contagious, some people in our neighborhood didn’t know any better.

“Many people didn’t want their children playing with me or with Susan or in our home. That was a really difficult thing.”

In August of 1960, chemotherapy was available but treatment protocols had not yet led to permanent cures. Linn Ann remembers Susan gaining and losing weight from the treatments so much her parents, both schoolteachers, had to frequently buy her new clothes.

The family soon began hearing about a new hospital in Memphis devoted to treating children with cancer and finding permanent cures.

They found hope in the appeals they saw from TV star Danny Thomas to help him make St. Jude a reality.

“I didn’t know who Saint Jude was but I knew who Danny Thomas was,” Linn Ann says.

But St. Jude was not scheduled to open until early 1962, and 1961 would be a difficult year. Some hospitals in those years held half birthday parties for children with cancer, knowing they might not make it to their next full birthday.

For the long periods of time Susan was in the hospital, her parents would have early dinner after coming home from teaching school, then go to the hospital to relieve the retired nurse who stayed with Susan during the day.

They would take two cars, so Linn Ann’s mother could stay the night with Susan. When there was no babysitter, Linn Ann would go too, staying in the waiting room until visiting hours were over when she would return home with her father, Buck.

It was on a December afternoon in 1961 that Linn Ann’s father picked her up from school, which was unusual because her mother taught there and always took her home.

“I knew something must be terribly wrong, even worse than usual, for my mom to be called to the hospital,” Linn Ann says. “Daddy told me that we were going to celebrate Christmas early, with Susan in her hospital room, which was a big deal because I wasn’t usually allowed in.”

Then her father told her why — the doctors did not believe Susan would live until Christmas.

“That was the first time I remember being told Susan was going to die,” Linn Ann says.

These moments, heavy with grief, linger long for bereaved loved ones of children who die far too young. For the retired journalism professor in Kansas, trained in retaining and chronicling life’s most telling moments, memories of those difficult days still sometimes wash over her.

“The last few days of her life, really she was in a coma,” Linn Ann says. “But she did make it after Christmas and they let me see her. I know she was on pain medication but I can feel her holding my hand still. She didn’t talk. We couldn’t play.

“That was the last time I saw her.”

Shortly after midnight on Jan. 1, 1962, 5-year-old Susan slipped away, like 96% of all children then diagnosed with acute lymphoblastic leukemia.

Thirty-four days later, on Feb. 4, 1962, Danny Thomas stood before a crowd of 9,000 people in Memphis and opened the doors of St. Jude Children’s Research Hospital.

Linn Ann says she has never felt resentful or bitter about St. Jude opening after it was too late for Susan.

Having experienced the grief and witnessed the impact on her parents, she’s grateful for what St. Jude has become. Even when her sister’s death was fresh, she was responding to Danny Thomas’ call to help kids who needed St. Jude.

When her piggy bank felt sufficiently heavy, Linn Ann and her father would pull the stopper from the bottom and the coins would spill forth.

“That’s how I learned to count change, because I wanted to know how much money I could send to St. Jude,” Linn Ann says. “My father would deposit it in the bank and give me a check for $5 or $10, which I put in an envelope, licked it and put a stamp on it. Daddy would lift me up so I could put it in the mailbox.”

In Hays, Linn Ann has called on her own past to at times help with the Center for Life Experiences, a grief support program she finds very impressive for any community, especially in a town of 20,000.

“So how does a child process grief? Well, it helps if a child can engage in an activity — draw pictures, create a memory box, tell stories,” Linn Ann says. “I did not know any of that after Susan died but I found my activity. I was going to help Danny Thomas make St. Jude a place where children can be cured.”

So when in 2006 Linn Ann finally arrived at St. Jude, the emotions were strong.

Maybe she knew St. Jude provided free housing to patient families, but remembering her family’s back-and-forth visits to her sister, she marveled at the accommodations.

“I got to tour one of the apartments and it was so comfy looking,” Linn Ann says. “They were just really trying to make it a home away from home. I could remember what it was like when families needed a place for their child to stay for a long period of time.”

She appreciated seeing children pulled in red wagons, surrounded by bright colors —  this didn’t feel like a hospital. It felt like a haven for kids.

“Just the whole atmosphere was very uplifting and very hopeful,” Linn Ann says. “I was very impressed by the personalized nature of the care and how everything is geared to the children.”

She has made the trip from Kansas twice more since, most recently in 2019 for the Danny Thomas — St. Jude Society event held for supporters, like Linn Ann, who have left St. Jude in their estate plans. Among the speakers was Dwight Tosh, patient No. 17 at St. Jude, admitted in April of 1962, two months after St. Jude opened and three months after Linn Ann’s sister died of leukemia.

“Hearing him, it brought back a lot of memories for me,” Linn Ann says. “Those reactions from people in his town, being scared to let him play with their kids, I related to that.”

But it was her first trip on that July day in 2006, to the specialty children’s hospital her piggy bank helped build, that remains most special. When she returned to Kansas, she submitted a piece about the trip to the local newspaper, The Hays Daily News, which ran it as a Local Voices column.

“I’ve been a little low on miracles lately,” Linn Ann wrote. “It’s nice to visit a place where they occur on a daily basis.”