Courtney Hardy took her infant daughter, Peyton, to the doctor for a six-week checkup on Nov. 5 and has not been home since.
Hardy, a 2008 graduate of New Hope High School, and her husband, Justin, live in Philadelphia, Mississippi, with their daughter. Peyton had been displaying some problems — some respiratory issues and other symptoms — that raised red flags. But doctors at neither Baptist Memorial Hospital-Golden Triangle in Columbus or Neshoba County General Hospital in Philadelphia found anything wrong until the six-week check-up, when a doctor told Hardy that he suspected Peyton might have leukemia.
Peyton and her family were flown via helicopter to Batson Children’s Hospital in Jackson, where the diagnosis came back: acute lymphoblastic leukemia (ALL) with rearrangement of the MLL gene. The family traveled to St. Jude Children’s Hospital in Memphis.
They have been there ever since.
It has left the family in shock.
“You see people going through this and you see GoFundMe pages and jars set up in stores and all this stuff in your community that happens to people, but you never think it’s going to happen to you,” Courtney Hardy said. “I never thought I would be here. I mean, I see St. Jude advertisements. I used to see it on TV all the time, but until it happens, you just never think it’s going to happen to you. I don’t know how to explain. I left my house that day, going to a six-week check-up…I have not been back. I was thinking I’d be back in a couple of hours after (Peyton) got her shot. And since then I have not been back at all.”
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It is very rare for infants to be born with leukemia. Of all the diagnoses of leukemia, only about 2 percent of those occur in infants, and the majority of those are born with it, according to Courtney Hardy. She said that when she first learned of her diagnosis, she didn’t believe it.
“I kept thinking, well I kept hoping the lab work had gotten somehow mixed up or messed up and her counts were not really what they’re saying they were,” she said. “And to this day I sometimes feel — but that’s just hopeful wishing.”
At three months, Peyton has a head full of reddening hair, according to her mother. She seems to like music from the movie “Frozen.” She smiles when she hears it. Of course, she smiles all the time, according to Hardy, provided she’s feeling good. Having someone sing to her seems to soothe her.
“She has a very strong personality,” Hardy said. “She has very unique expressions. You’ll know her mood.”
The nurses have told Hardy that sometimes they fight over who gets to look after Peyton during shift change in the pediatric intensive care unit (PICU). Peyton doesn’t even cry when she gets shots.
“That’s one thing that amazes me,” her mother said. “She has to get a shot twice a day for blood clots and she does not make a move or cry.”
Peyton gets chemotherapy through shots in her spine, which Hardy compared to an epidural. The chemotherapy has erased her immune system. Right now, Peyton has a cold, but that’s worse for her than for other babies. It is giving her more respiratory issues.
“Her body is trying to fight that infection, and the doctor told us that when it did start that she could get worse before she got better,” Courtney said. “So…her respiratory issues are currently worse because her counts are coming back. Which is a good thing but a bad thing.”
Soon, doctors will be able to check Peyton’s blood marrow and know whether the chemotherapy is working.
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While Peyton stays at the PICU, Justin and Courtney Hardy stay in a connecting room where they sleep on a fold out couch and have their own bathroom. Courtney’s mother has stayed at the Ronald McDonald House in Memphis, where Justin’s parents and stepmother stay when they come.
Peyton is in a clinical trial at St. Jude where she gets chemotherapy and drugs no other hospital in the U.S. uses. St. Jude will not bill the family for Peyton’s treatment. The hospital also provides meal cards to help pay for food. Meanwhile, the family has been getting money and other donations from friends and family in Columbus and other parts of the country.
“They have gone over and beyond,” Courtney said. “Not even just our friends and family. Strangers. Communities. Churches. Businesses…people we have no clue who they are have donated money, donated care packages…we need prayers more than we need any of that. It’s blown us away, all the support that we have received.”
Everyone at St. Jude has been friendly, from doctors to maintenance staff, Courtney Hardy said. And the nurses love Peyton as if she was their own child, she added.
It has made Hardy want to get involved in helping families, hosting meals at the Ronald McDonald House and finding other ways to help families with sick children. She also wants people to know how common the symptoms of ALL look. Peyton’s swollen stomach looked like gas. Doctors thought her breathing was caused by nasal congestion. Every baby gets those things.
“At first when she was diagnosed, I wanted to blame the doctors…I wanted to blame her pediatrician, and I wanted to blame the doctors in the ER in Columbus because I had expressed concerns and nobody did blood work,” Hardy said.
“But when I started to think about it, (I realized if they had) found out in any of those instances, I would not have had six weeks with her as a normal infant. … They gave me six weeks (in which) I did not worry about the type of stuff I’m having to worry about now.”
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Peyton’s doctor has given her a 20 percent chance of recovering. The doctor told the Hardys that her daughter’s cancer can likely go into remission, but the chances are extremely good that it will come back.
That’s why Courtney Hardy’s not necessarily worried about what’s going on now. She’s more worried about the future — about taking Peyton home in a few months and keeping her healthy.
“I’m very uptight as it is, and I know when I go home, when we go home with her, I’m going to be even more uptight,” she said. “I’m going to be worrying about everything at home. … In the back of my mind, I always sit there and wonder, Is she going to grow up and be able to do the things I had hoped for her to do — sports, college, marriage, kids? Because her doctor pretty much told us the first day she met us that she’s not worried about her right now, she’s worried about (Peyton making) it to the teenage years.”
“She’s a fighter,” Courtney Hardy added. “She is stronger than I could have ever imagined myself being. She has been through more in the past seven weeks that we’ve been here than myself or anybody in my family has been through. And she still smiles.”
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