More than 50 years separate the treatments of grandmother and grandson.
When Blaine Raider was diagnosed with leukemia in 2008, he was treated in the cancer center at Riley Hospital for Children at Indiana University Health in Indianapolis. He had an all-glass room, a recliner where his mom slept every night, and a TV where could watch hours of “SpongeBob SquarePants” while waiting for his bone marrow transplant.
His grandmother, Denise Saba-Higgins, often sat for hours in the room with him. She prayed that doctors would save his life, just as they had hers.
Nearly four years later, Saba-Higgins and her grandson can look back at the experience with celebration. Blaine received his transplant, and the cancer has not come back.
The two are linked through their shared success at Riley. Though it’s a bond Saba-Higgins wishes they didn’t have, both she and the rest of their family are thankful for the way it has turned out.
“It is our family,” Saba-Higgins said.
The Raiders and Saba-Higgins were invited back to the hospital as guests during the opening of the $475 million Simon Family Tower in September. Representing three generations of Riley families, Blaine and his mother, Alisha, toured the new facility designed to help celebrate the hospital’s role in their lives.
They saw the new family-only rooms, where parents, siblings and other family members essentially can move in while children are getting treated. Patient rooms with private bathrooms, Wii video game systems and flat-screen TVs are included in the new areas.
Blaine got to see the new playrooms and video game systems that children like him will be able to use during their hospital stays.
“Hopefully, we’ll never have to experience it again. But our friends that are there now, it’s much easier for them now than it was for us,” Alisha said.
The hospital was much different in 1959, when Saba-Higgins was admitted with a condition called kidney nephrosis. The disease caused her kidneys to release protein into her urine and water to build up in her organs. When her one kidney shut down, it was too much for her body to handle, and toxins built up in her blood.
‘Kind of like the Army’
In the battery of tests conducted before Blaine’s bone marrow transplant, it was revealed that he had the same disease. His healthy kidney compensated for the diseased organ, and since doctors had caught it early, it could be treated and controlled without damaging his health.
When Saba-Higgins was a patient, 20 kids were assigned to a ward, where 10 beds were lined up on each side of the wall. Nurses dressed in old-fashioned white dresses and caps.
The children were served food together in a large cafeteria, and they were required to line up every night to brush their teeth.
“It was kind of like the Army,” she said.
The most distinct memory she has is of visiting hours. People could only come and see patients from noon to 7 p.m., with no exceptions. No parents could stay overnight.
“When it was time for parents to leave, it was so traumatic. You had 20 kids standing there crying when their parents left,” Saba-Higgins said.
Three years have passed since the Raider family spent nearly seven months living at Riley Hospital for Children. Now 6 years old, Blaine is a rambunctious yet shy kindergarten student at Sawmill Woods Elementary School in New Whiteland.
He plays soccer with other kids his age and can play outside with no restrictions or extra precautions.
Every February, he visits his oncologist at Riley for a checkup. In the weeks and months after Blaine’s transplant, the family would dread each appointment. The thought of finding that the cancer was still in Blaine’s body, or that the transplant hadn’t worked, was unbearable, Alisha Raider said.
But every time his scans were clean. Blaine is cancer-free.
“It is hard to go back, but we’re there all the time. It’s a part of us now. Most of our closest friends now are people we met through the cancer journey,” Alisha Raider said.
Tests reveal leukemia
Blaine was 2 years old when he was diagnosed. The family had gathered for Thanksgiving. As relatives passed around Blaine and his other toddler cousins, they noticed that the little boy had an unusually hard and distended stomach.
Alisha Raider and Blaine’s father, Chris, had noticed the quirk in their son before, but they had dismissed it as a case of chubbiness. Blaine’s behavior hadn’t changed. He was still the same spunky child that they had known since he was born, who loved to crawl into the smallest spaces and hide or run and take a flying leap onto the couch.
“He seemed like the same little boy,” Alisha Raider said.
Still, the family urged them to go to the doctor to have it checked out. The day after Thanksgiving 2008, they took Blaine to his pediatrician. The doctor agreed that the toddler’s large stomach was not normal. He ordered rounds of blood tests and an ultrasound to examine what the problem was.
The results revealed that Blaine’s white blood cell count was extremely high. More tests followed, revealing that he had juvenile myelomonocytic leukemia.
A rare form of the blood cancer, the disease causes the bone marrow to make too many of an abnormal type of white blood cells. These abnormal cells crowd out healthy white blood cells and interfere with normal blood production, Alisha Raider said.
The only treatment is a full bone marrow transplant, and even with one, juvenile myelomonocytic leukemia has only a 50 percent survival rate.
The outlook was grim, Alisha Raider said. Blaine started chemotherapy right away, suffering through the treatment over Christmas.
Fevers and other sicknesses made it too difficult for him to move back and forth between the hospital and home. He would end up being in Riley for days straight.
Santa visited every day
Yet even in the midst of the ordeal, he didn’t lose much of his personality.
“Blaine would run when he has a checkup, and the doctors would chase him,” Alisha Raider said. “They’d come to check him, and he’d be under the bed. So they’d check him under the bed.”
Plus, the family learned that holidays at the hospital weren’t entirely bad. Blaine received piles of toys and games to keep him busy in the hospital; seemingly every day brought something new.
“Santa was in our room every day. He received so many Christmas gifts every day from the different groups up at the hospital that Mom would have to take wagon loads of things back to the house because we had no room,” Alisha Raider said.
On Feb. 6, 2008, Blaine received his transplant. The stem cells that had been provided through a donor program rejuvenated his immune system. Though it took several weeks of fevers, nausea and diarrhea, his body slowly accepted the new marrow.
He was able to go home by April, and though visits to the hospital for blood draws and tests were scheduled, the family’s life slowly returned to normal.
Through their four-year relationship with Riley, as well as Saba-Higgins’ experience there, the hospital asked the family to help with the opening of the Simon Family Tower. They had been involved with the Riley Prom each spring, and the Raiders had planned a fundraiser called Hop for a Cure to raise money for the Leukemia and Lymphoma Society.
Part of the celebration included bringing people from every decade that Riley has been treating children, all the way back to the 1920s.
“They just loved Blaine,” she said, then joked, “I don’t know why, he’s pretty mean. But they wanted to see him again.”
The trip back to the hospital was bittersweet. Despite the fact the Raiders have made friends during their years coming to Riley, it’s inescapable that it was a deadly disease threatening Blaine’s life that brought them there.
Still, with her little boy healthy, Alisha Raider and Saba-Higgins can accept what happened and look to the future. And they understand how much different their situations could have gone without the doctors and nurses at Riley.
“I wouldn’t know what life would be like without them,” Alisha Raider said.