Janae Heegaard is moving forward.
The 9-year-old isn’t the fastest runner on the Chick Evans Field House track during a Northern Illinois Athletics USATF youth club practice, and her pink and gray running shoes hardly leave the ground as she runs.
But step-by-step, her spindly legs move her forward, her shoulder-length brown hair bobbing with each pace.
That small difference in her gait is the last physical impediment of a disease that could have killed her.
The ability to run, jump and climb trees was taken away from the most eccentric of the six Heegaard girls when she was 5 years old, when her mischievous smile became less constant.
A tumor grew up the right side of Janae’s body until it awakened her in the middle of the night days before Halloween 2008.
Every day since has been a learning experience for Janae. Before she turned 6, Janae learned that simply moving forward around that track, step by step, is something special.
• • •
Janae lumbered into the living room of the Heegaard’s Sycamore home with a boot engulfing her right leg in November. Janae suffered an Achilles injury in cross country, but she was pretty sure she would be back up and running in no time.
It almost was cruel that Janae had her ability to walk hindered like this. For the past four years, she’s made constant progress on walking normally.
When she was 5, doctors discovered a form of cancer called a Wilms’ tumor engulfing her kidney. Five months later, she developed neuropathy, a nerve-damaging condition in her feet from which she’s still recovering.
But Janae seems to focus on the reasons she’s fortunate rather than the difficulties she’s faced.
“I look at all these other kids [she met with cancer], and I see that what they had to go through is nothing like what I did,” she said. “It makes me happy and sad for them, but happy for me that I didn’t have to go through everything they’re going through.”
That perspective came with a lot of pain.
•••
Janae’s screams reverberated down the upstairs hallway of the Heegaard household in the middle of the night October 24th, 2008.
A sharp pain ran along her right side, and her father, Frank, rushed to her side.
“I felt like something just bursted or popped,” Janae said later. “I was thinking, ‘Ow, this really hurt.’ “
After Frank gave her a snack and a glass of water, he eased her back to sleep. But minutes later, the screams started again.
Suzanne, Janae’s mother, was almost certain Janae had come down with appendicitis, so she took her to Delnor Hospital. They were sent away on their first trip, with Janae showing no signs of appendicitis, but a mother’s instinct told Suzanne to return.
Twenty or thirty minutes after Janae received a CT scan, the doctor returned to the room.
“She has a malignant tumor,” Suzanne remembers the doctor saying.
“You mean, she has cancer?” Suzanne responded.
“Yes.”
Suzanne put her head in her hands and cried. Janae didn’t react, her eyes becoming heavy after a long day.
•••
Janae’s smile is almost constantly on her face. It’s the type of wide smile that, upon eye contact with another person, beckons a smile back. Her happy personality was as normal throughout her pre-cancer years as it is today.
“She’s really hyper, really fun, cares about people, and is compassionate,” her 16-year-old sister, Ruth, said.
The day before a surgeon would remove the tumor along with one of her kidneys, Janae lay with her head in her hands at the foot of her hospital bed, smiling and posing for a picture.
Janae knew the basics of cancer from what her mother had explained to her in the week since the tumor was discovered. But she didn’t grasp the entire situation. There she lay in that picture, smiling like a normal, happy five-year-old girl.
But the good feelings wouldn’t last long.
As she was wheeled into surgery the next day, her heart leapt, at the gravity and uncertainty of the situation finally caused butterflies in the pit of her stomach.
“I was just laying there, like, ‘What’s happening?’ “ Janae said. “I don’t think I understood that I could’ve died. I kind of understood, mom told me this a lot through it: ‘This is a big, scary thing, you could die.’ But I still didn’t understand that I could die from it.”
•••
A 5-year-old’s view of the world is insular. Janae only understood cancer because it was happening to her. The consequences of a life-threatening illness didn’t completely sink in.
“When a kid has cancer, it’s so different from what you and I know in this world today,” Suzanne said. “We know that adults, even after they have their chemo and they’re feeling well, they still have this mental, like battle, of ‘Oh, I have cancer, I’m going to die.’ Kids, when they’re not feeling nauseous, or when their white blood cell count is not at zero and they still have energy, life’s 100 percent great.”
While she didn’t sink into depression, the normally boisterous child became subdued. Her smile became forced. In pictures it’s easy to see the exhaustion behind her sunken, brown eyes. Her already-skinny body became little more than skin wrapped around her tiny bones, and her hair steadily fell out in clumps.
“She was so sick and she got so thin,” said Ellyn, her 17-year-old sister. “She was just a lot less active – maybe still active for a kid her age, but a lot less active than she had been.”
•••
Suzanne couldn’t react in time to catch Janae, who fell flat on her face in the middle of the hallway at Children’s Memorial Hospital on a visit in early 2009.
Janae had crawled around the house throughout the previous few days, but Suzanne and Frank assumed Janae was being her normal, goofy self.
But on the way to Dr. Elaine Morgan’s office, Janae stumbled over and over again. Suzanne mentioned the tripping to Morgan, and the oncologist asked for more information.
Chemotherapy had overwhelmed Janae’s little body, and the nerves in her foot were damaged by neuropathy. Because Janae was so young, she’d eventually recover 94 to 96 percent of the feeling in her feet.
But Morgan tempered their expectations.
“I will definitely tell you she’s not going to be an Olympic athlete, like a runner or a ballerina,” Suzanne remembers the doctor saying.
•••
Frank looked out the window on a summer day in 2009 to see Janae playing tag with her friends. Chemotherapy had been over for a few months, and her signature smile was returning.
But her ability to run normally had not returned. In May, Janae was fitted for ankle-foot orthotics, which kept her foot at a right angle to her leg. Although she could plod along at a slow pace, when she tried to speed up, she fell to the ground.
Janae trudged into the house and cried to her father.
“I saw her look up, cry, and come over for support for a hug,” Frank said. “That was a hard time, when she couldn’t run. … She loves to move.”
Her breakdowns never lasted long, but Janae was constantly reminded that she was different. She heard boys at church comment on her bald head, and she felt eyes looking at her as she walked with her mother through the grocery store.
Every time she hopped into or out of bed, she’d take off the AFOs and flex her feet as much as she could.
Finally, she was told she didn’t have to wear the braces in September of 2009. All she wanted to do was run, but her legs were too weak, so her mother encouraged her to start with walking.
“I felt free,” Janae said.
•••
Janae stands on one foot with a smile on her face at Moose(L) Up Redemption club, a small gym in Sycamore specializing in off-beat training techniques that mimic practical movements. She moves throughout different exercises that will help strengthen her ankles.
The session was run by a physical therapist named Denny Kolkebeck, who is sure Janae won’t feel impeded if she takes the right steps to recovery.
In the early days of her neuropathy, Janae’s sisters would alter their backyard games to allow her to play, but she’s gradually worked her way back to normalcy.
Last year, she began running with the Northern Illinois Athletics’ cross country team in DeKalb. In her last race, she placed 11th at the state meet, finishing the three-kilometer race with a time of 15:29, which would have qualified her for the national championships had she not hurt her Achilles.
Most importantly, she was running with little impediment.
“My favorite thing is being there and knowing that I can run,” Janae said. “Sometimes I think about that. I’m like, ‘Wow, I’m actually running as fast as my friends.’ “
•••
On an evening in early January, Janae and her mother rifle through a box of hats that she wore as her hair began to dwindle. Janae picks out a yellow hat with a sunflower and tries it on – it was her favorite because of how comfortably it fit on her bald head.
Janae isn’t completely out of the woods yet, even after being cancer-free for more than three years. A 10 percent chance of recurrence still remains, and the prognosis isn’t good if it does. But in reality, the family feels as if it has finally recovered from the most trying time in their lives.
The reminders of what Janae went through are all over the Heegaard’s house. Suzanne has hundreds of pictures of Janae’s time with cancer on a flash drive. Stuffed animals Janae received during her treatment lay in various locations around the house. A small black Havanese dog named Amica, which the family bought during treatment, trots around the house.
A tiny, active 2-year-old girl named Hope plods around the house, pining for attention. Hope is the youngest Heegaard daughter, and she was born less than a year after Janae’s final chemotherapy treatment. The Heegaards named her as a constant reminder of what guided them through Janae’s struggle.
It’s no wonder that, every once in a while, Janae’s bout with cancer will pop into her head.
“Sometimes when I’m laying in bed, I just remember the whole story of when I had cancer,” Janae said. “Sometimes things just pop up into my head. When I’m in the middle of conversation about dogs ... things come up.”
To Janae, memories of her cancer aren’t necessarily good or bad. They were simply her reality, normal memories of her past. As she begins to see the world in a broader view, her bout with cancer is a reminder that she’s lucky to be alive and with her family, moving forward, step-by-step.
Every now and then she vocalizes those feelings, as she did at a church service on the eve of Thanksgiving, when members of the congregation were asked to volunteer what they were thankful for.
“‘I’m thankful that, when I had cancer, God let me live so that I can be with my family longer,’” she said.
Suzanne was surprised.
“I thought, why did she say that now?” Suzanne said. “Because it feels like it’s less connected, it feels like it’s been a really long time, it feels like we’ve moved on with normal life. Four years later, why did it take this long? I thought, ‘She’s finally starting to digest it all.’ “
