Fundraiser for Kenzey Smith Oct. 13 at Grace Lutheran
SALISBURY - As a father, Jason Smith is used to feeling protective of his and wife Diane's four daughters.
But he wasn't quite prepared for Kenzey, age 4, to prove just how tough a little girl can be.
"Kenzey is amazing. She's changed my life," Jason says. "She's my hero."
Back in early February, Kenzey was hit by fever and leg pains - symptoms that first surfaced in December. During the first bout, a doctor said her problem might be viral. But the return of the fever and pains raised another possibility: leukemia.
The doctor referred the family to a specialist at Levine Children's Hospital at Carolinas Medical Center in Charlotte. Later the same day, after tests showed Kenzey had a rapidly progressing cancer of the blood and bones called acute lymphoblastic leukemia (ALL), Dr. Daniel McMahon and his staff helped get her treatment started immediately.
The diagnosis was a shock. Diane had given birth just two weeks earlier to the fourth of the Smiths' daughters, Jenna. As a new mom, Diane's hormones and emotions were already on edge.
"Having another child was joyful. Then, to have her diagnosed with this ... You go through a lot of emotions," Diane says.
As cancers go, ALL is one of the most curable kinds of leukemia. Though Kenzey's body was slow to respond to treatment at first, Diane says, doctors intensified her treatment, sometimes giving her four forms of chemotherapy at a time. Her chances of survival are about 90 percent, Diane says.
Kenzey goes to the clinic nearly every weekday and has been in and out of the hospital for the past 8 months as her body deals with the chemotherapy and fights infections. Her treatments will continue into 2014.
Kenzey has not had the nausea often associated with chemotherapy, Diane says. Kenzey has days when she doesn't want to eat at all. Other days, the steroids she's taking make her want to eat everything.
"They told us we would be surprised, that she would be resilient, and she has," Kenzey's mom says. "She's so amazing. She still wants to play." She's too young to be afraid, so she just goes on with her life the best she can.
"But she does get tired really easy." Some of the chemo causes muscle pain. And her hair has fallen out - twice, in fact.
"She had really long hair to begin with," Diane says. Hearing that it would be easier for Kenzey to have her hair cut than see it fall out, they had 12 inches cut off. Once the chemotherapy started, what was left of her hair fell out in two days.
"She had a few sprigs that stayed around," and the rest was beginning to return until it fell out again two weeks ago.
The medicine is making her blood better, the Smiths tell Kenzey, and losing her hair is just part of it. It will grow back.
"She said she's ready for her long hair again so her sister can braid it."
That would be big sister Lea, 13, an eighth-grader at Southeast Middle School who Diane says is "pretty amazing in herself." Leah has kept good grades and continued playing sports as her parents try to keep home life as normal as possible.
"Kenzey loves to play with her; she admires her. I think the feeling's mutual."
Their 2-year-old, Kaylyn, is trying to take it all in. She sees Kenzey being held a lot, Diane says, and wants to be held, too.
And the baby is getting too big to spend long days at Kenzey's bedside in the hospital. "Now she's getting more mobile. ... Being confined to a small room for a week at a time is hard enough for us," Diane says.
The Smiths are blessed to have strong family support nearby. Diane's parents, Jimmy and Helen Kinley, live in Woodleaf. Jason's parents, Darrell and Debbie Smith, live in Salisbury
Kenzey misses going to church and Bible class at Corinth Church of Christ in Woodleaf, according to her mother. Their church family has been very supportive.
"God has blessed us with that, too," Diane says. "We have such an amazing support team of family and friends - and people we don't even know." Kenzey is on more prayers lists than the family knows about, and several churches and organizations have held fundraisers to help the family.
Jason works at Freightliner, in addition to growing row crops on their farm, so the family has insurance. But driving back and forth to the Charlotte clinic and hospital, covering copayments and deductibles and the countless other unexpected expenses of dealing with a serious illness have made the Smiths grateful for the help.
The community will have another opportunity to give Kenzey a hand next Saturday from 5 to 8:30 p.m. when the Grace Lutheran Church Men in Mission hold their fourth annual Fish Fry Fundraiser at the church on Grace Church Road. (See box for details.) Grace Lutheran is Jason's parents' church.
The Smiths have a lot on their shoulders.
"It can get kind of difficult some days, but you just kinda have to breathe," Diane says. We're going to get through it. We have faith in God - no matter what the outcome is - we'll get through it.
"As parents, you hang on to that 90 percent chance. In the back of your mind you think of that 10 percent, both of us have, but you push it back."
Jason can't say enough about how grateful he and Diane are for all the help - he'll be thanking people for a long, long time and mean every word of it.
He also can't say enough about how amazing Kenzey has been through her illness. Even though she's sick and faces a long road, Kenzey still shows concern for others and how they're feeling, he says.
"I've learned a lot from her the past six months."