By Maureen Gilmer, IU Health senior writer, firstname.lastname@example.org
It was a casual conversation between neighbors that got the ball rolling.
Westfield resident Lindsey Kesler happened to mention to Jenny Belsky one day that she was a Riley kid, and that was how a reunion within the walls of Riley Children’s Health came to be.
That’s because outside of being a neighbor, Belsky is a physician and director of Riley’s pediatric lymphoma program, and she was curious to learn more.
Kesler, now married and the mother of two, was the first stem cell transplant patient cared for at Riley almost 30 years ago.
Diagnosed with aplastic anemia at 8 years old, she was one sick little girl.
Aplastic anemia is a rare but serious blood condition that occurs when a person’s bone marrow cannot make enough new blood cells for the body to work normally. Left untreated, the risk of death is as high as 70% in the first year.
The diagnosis rocked the world of Kesler's parents, Carla and Myron Earhart, who also had a younger daughter, Allison.
The best hope for a cure (then and now) was a stem cell transplant, Riley doctors told them, but it was a relatively new form of treatment and Riley’s program was still being developed.
They took the doctors’ advice and coordinated with a hospital in Kentucky to get the transplant in February 1994, then returned to Riley for months of intense treatment and years of follow-up care.
To see her again after so many years was a thrill, they said as they met with the entire family earlier this month in the lobby of the Maternity Tower.
“You’re all grown up,” Dr. Robertson said as he and Kesler hugged.
“I’m actually getting old,” she responded with a laugh.
Neither was a given when she was a little girl.
“This is the door we used to come in (before the Maternity Tower was built),” she said. “We would go to clinic B, and that’s where I had my blood transfusions,” she recalled. “We used to call it the confusion room instead of infusion room.”
Kauffman, who started at Riley in 1986 and joined the oncology team as a nurse practitioner in 1989, remembers that time well.
“She was my baby. I took care of her,” Kauffman said. “She had a really rough post-transplant course.”
“Standing up a stem cell transplant unit was a big deal then, and it looks radically different today,” Dr. Robertson said.
Kesler’s parents remember how hard it was to see their little girl forced to live in a “bubble” in the hospital when her immune system was at its weakest. They would put on a sterile gown, mask and gloves before reaching in through little holes in the plastic shield that surrounded their daughter just to touch her hand.
Dr. Robertson remembers.
“We would examine patients with gloves through the holes (of the plastic screen) and a stethoscope that was attached to the bubble because there was no immune system,” he said.
“Today, we have these HEPA-filtered rooms that are rich in purified air and all positive pressure, so they really keep a clean environment,” he added. “We’ve learned a lot more about risks for infections and the things we can do to take care of that. It’s made a huge difference.”
Allison Earhart, who at age 7 was her older sister’s bone marrow donor, didn’t understand what was happening at the time but does recall that she got $10 out of the deal, along with a sore back.
“I think I used the money to buy candy,” she laughed.
The girls’ parents can also laugh about the deal they struck now, but at the time, they knew their youngest child might just be able to save her sister’s life.
“We tested everyone in the family,” Carla Earhart said. “Allison was a 5 out of 6 match.”
It was just three weeks from diagnosis at Riley to transplant in Kentucky, said Dr. Robertson, who came to Riley in 1993 from Seattle.
“In those days, you scooted patients into transplant as quickly as you could because the risk was that they would get an infection they couldn’t fight,” he said.
At the time, the odds of success weren’t good, Dr. Robertson said, “but if you don’t do something, ultimately you run out of gas.”
Today’s treatments have improved dramatically, he added, “but many of these kids will still go on to have stem cell transplants.”
Now, Riley does 40 to 50 stem cell transplants a year, he said, treating everything from cancer to sickle cell disease.
Despite how far the transplant program has come in three decades, “we’re always asking, how can we do it better,” Dr. Robertson said, “with a critical eye to the functioning of the unit, the personnel and the care of the patients. They will ultimately tell you if you’re doing the right things.”
It’s still intensive therapy that comes with risks, but outcomes are much better today, he said.
As a child, of course, Kesler didn’t realize how sick she was.
“I was 100 percent naïve because of these two,” she said, pointing to her parents. “I had no clue what the stakes were.”
Even when she was granted a trip to Disney World by the Indiana Children's Wish Fund when she was very sick, it didn’t sink in.
“I didn’t know what a Wish trip even meant until after college,” she said. “I thought it was just because I’d done an awesome job in the hospital.”
She and her family are grateful to Dr. Belsky for making the pre-Thanksgiving reunion at Riley possible.
“My heart is at Riley, of course,” Kesler said. “I just wanted to share our story. We spent so much time here, and my dad even quit his job to take care of me.”
She and her sister say they have worked through any sibling rivalry issues they were once too young to understand. The two are very close now.
But Allison Earhart jokes that if asked to donate bone marrow to her sister again, she might double the price to $20.