November 26, 2009
Kiley's fight...
Kiley Heffner, a 6-year-old from Dayton, battles leukemia with such dignity and courage that it inspires a community to rally behind her.
By Aaric Bryan
Valley Journal
Six-year-old Kiley Heffner has a small role, a role she isn’t too happy about, in the upcoming Dayton School Christmas play, but there’s little doubt that she’ll be there to deliver her single line like only she can.
Last December, Kiley was battling a constant fever that would break to only come back stronger. Inexplicable bruises kept showing up on her small body and she was tired, she was always tired.
“But I still went to the Christmas play,” Kiley chimes in as her father D.J. tells the story in the front room of their one-bedroom house in Dayton.
Kiley did make it to last year’s play, but her illness only got worse afterwards. D.J. had taken her to a doctor, but the doctor failed to recognize her symptoms and dismissed them as the common illness that was going around at the time. On Dec. 28, after watching his youngest daughter just get sicker, D.J. decided to take her to the Kalispell Regional Medical Center, where he said within 30 minutes she was diagnosed with acute lymphoblastic leukemia.
“Words can’t describe it. You feel lost. You feel empty. You feel helpless; there’s nothing you can do. You never feel like it’s going to happen to you. It’s been a battle ever since,” the 36-year-old single father of two said of receiving the cruel diagnosis.
The next day, Kiley was on a jet and on her way to The Children’s Hospital in Denver, where she would spend the next six weeks being poked and prodded by doctors and nurses as they tried to come up with a plan to treat her disease. D.J. isn’t sure how many tests Kiley had to go through in those six weeks.
“All I can tell you is, in the first couple of days I had met 100 different doctors and nurses,” D.J. said.
The 100 different doctors and nurses D.J. met came up with a chemotherapy plan that involved no radiation, but more than a dozen daily medications and constant trips to Kalispell for medical treatments, plus the trips back to Denver. If everything went as planned, the treatment was supposed to take two and a half years.
On Saturday evening it looks like the plan is working. It’s a good night for Kiley, a kind of night the family has seen too few of the past year. Bald for seven months, Kiley’s hair has grown back. Her short-cropped hair has come back in two different tones, but it has grown back. As she sits in the front room, going over her Christmas wish list with her older sister Danielle, her smile spreading to the dimples of her chubby cheeks exposing her missing front teeth as D.J. teases her, it would be easy to forget that’s she’s sick.
But D.J. isn’t fooled. He knows that it never goes away, that it’s always there. It could be lurking just under the surface of her calming eyes, ready to strike and sabotage any sense of peace the family had. D.J. knows this by experience.
Kiley has spent the past eight weeks in and out of hospitals. She spent the last week of October at Kalispell Regional with the respiratory syncytical virus. After being released, Kiley didn’t get to spend too much time at home before she was rushed to Missoula Community Hospital to treat severe abdominal pain.
“Just about the time you think it’s going to be all right, things are looking up and going the way they need to be, something happens that reminds you of how precious life is,” said D.J., who spent last weekend by her bedside in Missoula.
The recent hospital visits have put her behind on her treatment plan, and she can only receive about half of the recommended doses of her chemotherapy. But on Saturday night, D.J. is trying to forget this. He is also trying to forget how on her last blood test that Kiley's absolute neutrophil count was hovering around zero. With a disease that attacks the white blood cells, weakening the body’s immune system, neutrophils fight against infection and the ANC count is the tell-tell sign if the chemotherapy is working. A normal ANC is 1,500 or higher, and an ANC below 500 is considered dangerous.
Kiley is draped over D.J.’s shoulder as they walk into the Kalispell Regional’s Infusion Center Wednesday morning. D.J. knows exactly what room they’re supposed to be in and walks directly to it, gently setting her down on the bed with her blue blanket. Kylie routinely takes off her shirt so the nurse can access the mediport in her chest, then she reaches for the Christmas ornaments her grandma Donna brought for her to paint.
As Kiley sits in her hospital bed painting the little silver ornaments, the sleepiness gradually shakes off and she is suddenly wide awake and giggling.
“You try to do something that keeps her mind active,” Donna explained by Kiley’s bedside. Donna has spent so much time at the hospital with her granddaughter that during the summer she managed to teach her how to crochet. The crafts might be a distraction for Kiley, but she is always aware of what is happening around her. “She knows what is going on. She knows all the time,” Donna said.
Kiley knows when the nurse walks in the room, and her giggling immediately stops and her mood turns serious. It’s a new nurse. Kiley’s favorite nurse is on vacation in Oregon, and she doesn’t like this. She calls for her dad, who is at her side and has already donned his facemask.
D.J. and Kiley have been through this too many times to count. So many times that D.J. instructs the nurse that she needs to move the needle lower to access the mediport. It doesn’t matter how many times Kiley has been through this, she still hates needles.
D.J. tells her to start counting as the nurse tries to find the mediport. The squeaky child voice is gone, replaced by a fearful shriek. Kiley reaches five before she lets out a shrill cry, which is loud, full of pain, and could pierce stone. And then it is all over.
Kiley is subdued for some time after the nurse has left the room to get the blood tested. She paints for a while. She eats pancakes. She watches cartoons with the baby doll she brought from home. The mood gradually lifts and her smile returns.
D.J. is smiling too. The blood test revealed that Kiley’s ANC count has improved to 2,400. That means she can receive her dosage of Vincristine, D.J. explains. As D.J. rattles off the list of Kiley’s medication, it’s easy to forget that he is a logger by trade and not part of the medical field.
By the time Kiley receives the Vincristine, D.J. has crawled into bed with Kiley and is tickling her. Kiley laughs. It’s an innocent laugh, devoid of any suffering. It’s a defiant laugh, letting the horrible affliction know that she is winning.
It’s the most beautiful laugh D.J. has ever heard.
The Heffners' visits to Kalispell Regional have become less frequent. They only make the 60-mile round trip about once a week now, and they’re hoping these weekly visits will become monthly visits. They’ll know if this is a possibility after a visit to The Children’s Hospital in January. It will be their fourth visit to the Denver hospital.
When Kiley was first diagnosed, the Heffners' trips to the medical center was nearly a daily occurrence. D.J. figures he put 36,000 miles on his quickly aging 2001 Chevy Silverado in nine months' time.
D.J., a logger with a commercial driver’s license, soon learned that caring for his sick daughter was a full-time job, so he traded in his chainsaw for a nurses gown.
“It’s constant care, sometimes we’re up every two hours all night long because of the pain she is in, and she’s up taking a hot bath. It’s been good the past couple of nights. Some nights are better than others; you just never know,” D.J. said.
In the first couple of months, D.J. filled out application after application for part-time jobs, only to be turned down by the prospective employers once they learned of the uncertainty that comes with a father taking care of a 6-year-old fighting a potential fatal disease.
In nearly a year since Kiley was diagnosed, D.J. has been out of work, working the occasional side job to scrape together some money to get by.
“I really can’t get a job with this. I just spent seven days in the hospital with her and five days later I went and spent my weekend with her again. Who’s going to hire me, when I can’t be relied on to be there,” D.J. said.
If worrying about his daughter’s white blood cells count, making sure she’s taking the right medication and always being there to comfort her when her spirits are wavering isn’t enough for a single father of two, D.J. also had the burden of wondering how he was going to afford to get Kiley to her next scheduled treatment.
The fast-deteriorating Silverado isn’t the most fuel-economic vehicle. D.J. said there were weeks where he spent more than $2,000 in gas driving Kiley back and forth to her chemotherapy treatments. The truck has 264,000 miles on it, and is always in danger of winding up on the side of the road. The transmission had to be replaced, and the truck just got out of the shop with a cracked transfer case. D.J. can’t afford the gas, let alone the repairs on the vehicle.
Aaric Bryan/Valley Journal
Kiley brightens the room with her toothless smile and indomitable spirit.
When Nick and Diane Hanson, owners of Re/Max American Dream Properties, found out about Kiley, they knew they had to help her. Once the married couple from Dayton discovered that it was Kiley’s dream to fly, they organized a hot air balloon ride for her. A plan for Kiley to fly in an airplane is still in the works, and the Re/Max office bought her a Barbie Jeep.
“Anybody that has children understands. That’s what I believe. People that have children understand how hard it is to deal with,” D.J. said explaining why people want to help them.
But the outpouring of support is more than just seeing someone in need and trying to help. It’s more than a small town rallying behind one of their own. The way that Kiley is taking on the disease is inspiring. That so much courage can be contained in a 43-inch, 44-pound body is absolutely amazing and something people want to be a part of.
“She fights it with a lot of grace. Often times you wouldn’t even know she is struggling with it. She’s definitely down to earth and has a great outlook on life,” said Jan Toth, the special education director at the Dayton School.
The school plays a central role in Kiley’s life. Fighting a disease that is unpredictable and no day’s schedule can be determined until that day. D.J. said that the school offers Kiley a little normalcy in a world of uncertainty. Being around friends and people her own age also is a welcomed escape from a day of being surrounded by doctors and nurses.
“Friends,” is what Kiley says is her favorite part of school. Out of the 34 other students that go to the school, Kiley considers 34 of them as her friends. They consider her their friend too. Last spring, they organized a taco dinner to raise money for the family.
Kiley tries to make it to school as much as possible, but the chemotherapy keeps her at home a lot of the time. The school has set up a homebound program for Kiley, where an instructor will come to her home to make sure she keeps up with her classmates.
As tough and as brave as Kiley is, there are moments where the ordeal even seems too much for her.
“She finally broke down the other night and asked why her sister was healthy and she wasn’t. She asked if she was supposed to be born. What do you say to that?” D.J. asked. “You just have to keep pushing forward. All we can do is tell her we love her and God wouldn’t give her anything she couldn’t handle. She’s strong enough to handle it,” D.J. said.
One earful of her boisterous laugh and one glimpse of her toothless smile leaves little doubt, that Kiley is more than strong enough to handle it.
(Editor's note — There will be a benefit for Kiley at the Polson High School Gym Sunday, Dec. 13 from 2 to 6 p.m. There will be a potato bar, family Christmas photos and a silent auction. A savings account has also been set up for Kiley at First Interstate Bank at 106 2nd E., Polson, MT 59860.
Anyone interested in donating items for the silent auction or for more information contact Raelynn Peterson at 529-5765.) |
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