As any mother would, Darcy Hoffman woke with a start in the middle of the night at the sound of her daughter’s cry.
Clarissa was 7 at the time, and it was 3 a.m. The house was dark. Darcy leapt from her bed and raced to her daughter’s side. She found her in the living room, slumped and stiff against the couch.
“I thought maybe she was sleep walking,” Darcy remembers. “But she wasn’t. It seemed to be some sort of seizure.”
Darcy and Bruce had noticed their daughter’s pale complexion for some weeks. They also noticed she bruised easily. Was that something of concern in an active child? They thought perhaps Clarissa was anemic and gave her vitamins. They made an appointment with their pediatrician, but the appointment was weeks out.
When Clarissa stumbled into their bedroom two days later, once again in the middle of the night, and said to her parents, “It’s happening again,” the Hoffmans knew they had to seek medical help, fast. Clarissa fainted. The Hoffmans carried her to their car, dropped their two older daughters off at their grandparents’ house, and raced to Spectrum Health Helen DeVos Children’s Hospital in Grand Rapids, Michigan.
“It was an hour drive, but we couldn’t wait anymore,” Darcy says.
“We were speeding, but we needed help right away,” Bruce says.
Into helping hands
Soon after they arrived at the children’s hospital emergency department, a sample of Clarissa’s blood went to the lab for testing.
“Our thought at first was that maybe this was something neurological,” Darcy says.
Then the results of Clarissa’s blood work came back.
“I saw the feet lining up just outside of the curtain around Clarissa’s bed,” Darcy recalls. “They were hesitating to come in. I knew in that moment something was terribly wrong.”
Sharon Smith, MD, specializes in pediatric hematology-oncology at Helen DeVos Children’s Hospital. When lab results for Clarissa’s blood work became available, she received a call, and when she heard the numbers, she rushed to the emergency department to meet her new patient.
“This little girl’s hemoglobin count was just above 2. Normal would be around 12,” Dr. Smith says. “Her white blood cell count was well over 400,000, and normal would be a fraction of that. With those kinds of numbers, a patient can have a stroke, so we had to decrease the white blood cell count down as fast as possible.”
Clarissa had T-cell acute lymphoblastic leukemia, a type of blood cancer. Additional testing also told Dr. Smith that Clarissa had leukemia cells in her spinal fluid, which surrounds the brain.
The curtain moved aside, and the medical staff came in to talk with the Hoffmans.
Dr. Smith shared the news with Clarissa’s distraught parents.
Since this type of leukemia progresses quickly, quick treatment is vital or the disease can be fatal.
“It was in Clarissa’s favor that she was a child rather than an adult,” Dr. Smith says. “But it was important that we begin chemotherapy right away.”
“All I could hear was, ‘She has cancer,’” Darcy says. “But then Dr. Smith stepped forward and made sure we heard her words: ‘This is curable.’ That was the lifesaver we needed at that moment.”
“Dr. Smith put us at ease,” Bruce says. “She told us the truth, which wasn’t easy, but we trusted her.”
Clarissa stayed in the pediatric intensive care unit for more than a week as she received chemotherapy.
“Clarissa took it all like a trouper,” Bruce says.
Dr. Smith didn’t sugar-coat anything, but she reminded the Hoffmans that this type of leukemia in children like Clarissa has an 80 percent cure rate.
“Treatable isn’t always curable,” Dr. Smith says. “I believe in being honest with my patients and their families, but I expected we could cure Clarissa. It was a mountain for us to climb and get to the other side.”
Those first days turned into weeks, months, then two years and three months before Clarissa completed her treatment. As her immune system weakened with treatment, complications arose at regular intervals. At every sign of danger, night or day, the Hoffmans repeated the drive from home to the children’s hospital.
“For a ‘chemo kid,’ even a fever of 101 was a big deal,” Darcy says. “Making sure the port area for her chemo treatments didn’t get infected was always a concern, because that’s a straight line to the heart.”
Sometimes Clarissa ended up staying at the hospital, battling pneumonia or some other complication. Receiving radiation treatments for the leukemia cells in her spinal fluid proved to be especially scary.
“Dr. Smith warned us when the radiation began that Clarissa may not go to Harvard, but that she would probably come through just fine,” Darcy’s voice quivers as she recalls hearing those words.
She knew her daughter’s high level of intelligence, and that attending Harvard University had been a real hope for her. Radiation, Dr. Smith explained to them, could potentially cause irreversible brain damage. Yet the choice had to be for life.
Darcy draws a deep breath.
“But Clarissa came through radiation fine,” she says. “She’s as bright as ever.”
No moment lost
Keeping up with schooling, in fact, was part of the program at Helen DeVos Children’s Hospital. Social workers and teachers helped Clarissa with her school work and they even advised the family how to explain her illness to her peers.
The Hoffmans asked for advice, too, on how to explain the situation to Clarissa’s two sisters, Hope and Abigail, about what was happening to their little sister.
“That was the hardest day of my life, driving back home when Clarissa was first diagnosed to tell the girls,” Bruce says. “It was rough. A lot of tears. A lot of worry in their faces.”
“In the long run, though, this changed us all. It made our daughters stronger and more compassionate,” Darcy says. “The girls learned how important it is to be kind to people, because you never know what someone might be going through.”
Family was one of the Hoffmans’ greatest blessings in this difficult time. Grandparents took over watching the older girls while Darcy and Bruce met Clarissa’s needs, even as they did their best to still attend school events and special occasions. Life may have been in upheaval for the entire family, but as Darcy says—“you still have to do the laundry.”
Supporting each other, the family gathered as one when Clarissa began to lose her hair. When enough of her hair had fallen out, she agreed to shave her head, but she wasn’t alone. Mom shaved her head, too. Dad shaved most of his, leaving only a Mohawk strip of hair down the center, colored pink. Her sisters dyed their hair bright colors, too.
Clarissa wore hats for a while to cover her bald head, but then was encouraged enough by her colorful family that she dropped the hat and stuck “googly eyes” and a fake mustache on the back of her smooth skull—much to her family’s amusement.
“Clarissa kept a positive attitude and made us laugh,” Darcy says.
“People ask me still—how did we get through all this?” Bruce says. “When it’s your child, someone you love, you just do. You do what needs to be done.”
Clarissa, now 10 years old, considers the experience she’s had.
Asked about what advice she might have for other kids going through something similar, she says, “I was scared during radiation the first time because they put a thing over your face, and you had to stay there still by yourself. But it got easier the more you did it. You get used to it, and it doesn’t last very long. Some of the treatments might make you feel bad, and they can be hard, but when they are over, you go back to feeling good. I was scared, too, about losing my hair and about radiation and treatment, but now that it’s over, my hair has grown back and I feel good.”
Clarissa concluded her treatment a year ago.
“Now I feel great and I play sports, sing in the choir and act in school plays, and people who don’t know I had cancer can’t even tell that I did,” Clarissa shared.
And, with each monthly check-up, her blood work continues to come up clean.
“Dr. Smith always says she doesn’t have a crystal ball, but with every day without a relapse, Clarissa’s odds for a complete cure go up,” Bruce says.