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The Kaylahni Laboy Family

Looking back, Kiara Laboy thought Kaylahni was making silly baby faces when she was only a few months old. Now that she’s had more experience as a mom, she says, she would’ve picked up on it. She only started thinking something might be wrong with Kaylahni when she started becoming very lethargic, feverish, and getting sick.

Kiara’s mother-in-law alerted her to other strange behaviors of Kaylahni’s, like how she wasn’t following moving objects correctly with her eyes and that she was favoring one side. But because Kiara was a new mom, she said she didn’t really pay much attention to it.

When the Laboys got back from a vacation to New York, Kaylahni was cranky and crying frequently, and just not acting like herself, so Kiara took her to the doctor. There, they said she was overstimulated from the trip. A day or two later, Kaylahni developed a fever.

Kiara took Kaylahni back to the doctor and for the next week, bounced back and forth with her from the pediatrician to the emergency room. They told the Laboys that what Kaylahni had was a viral infection, to give her Pedialyte and let it run its course. But Kaylahni was only four months old, and the way they told her to take it was messing up her electrolyte levels without her parents even knowing. It got to a point where Kaylahni was so lethargic that Kiara would lift her hand up, but it would just flop back down.

Finally, Kiara took Kaylahni back to the pediatrician and said something was seriously wrong with her. She had a fever, was vomiting, and wasn’t eating or drinking. The doctor did some bloodwork, but thought it was just the flu. Kaylahni was so dehydrated that her bloodwork was taken from the heel of her hand, drop by drop.

As soon as Kiara and Kaylahni got home after that appointment, they received a call from the doctor who told them that Kaylahni’s white blood cell count was high, and that they had to be admitted to the local hospital. At the time, they thought she had meningitis.

When they arrived at the hospital, they immediately began an antibiotic round without knowing what Kaylahni had. They also did a spinal tap. When the doctor came out of the room with her spinal fluid in a vial, he said that he was sure it was meningitis because of its cloudiness. They continued her antibiotics.

Kaylahni and Kiara stayed in the hospital overnight. The next morning when Kaylahni woke up, she almost immediately had a full-blown seizure. Within minutes, they put Kaylahni in a helicopter to transfer her to Penn State Health Children’s Hospital in Hershey.

It turned out that for months, Kaylahni had been having absence seizures. She would make what Kiara thought were just those silly baby faces. These seizures are more common in children than adults and can involve brief, sudden lapses of consciousness.

In Hershey that night, Kaylahni’s doctors had done an MRI and many other tests and had found a tumor in her brain that needed to be removed immediately. They told the Laboys she had a 50% survival rate because she was so young.

Kaylahni’s surgery was supposed to take eight hours but took less than that. The surgeon told the Laboys that the tumor was in its own little socket of Kaylahni’s brain, almost as if it was ready to be scooped up. They told the Laboys that it was highly probable Kalahni would be unable to see or speak, among other potential side effects of her tumor, seizures, and the surgery.

After the hospital had biopsied Kaylahni’s tumor, they found that she had Ependymoblastoma, a highly malignant and rare childhood brain cancer. Kaylahni would need chemotherapy. She ended up developing hydrocephalus, and needed a shunt, which delayed her chemo treatment start, but began chemo shortly after that.

Kaylahni did six rounds of chemo and had a stem cell transplant all before the age of one. She wrapped up treatment around mid-March 2010. Her birthday is March 15, and the Laboys have a picture of her in clinic wearing a birthday hat.

Even after finishing treatment and all these years later, Kiara says that “it’s still rough.”

“She can have a headache and my mind goes right back to that point in time,” Kiara said. “She’s been in the hospital a few times after that. Her health has always been an issue even after treatment. Just because your treatment is done doesn’t mean that everything’s back to normal.”

Thankfully, none of the doctors’ warnings of potential side effects became true. Kaylahni is now 14 years old and a freshman in high school. She’s on the swim team and enjoys freestyle, breaststroke and backstroke. She also loves reading romance books and has recently loved Icebreaker by Hannah Grace.

One year at her school’s Mini-THON, Kaylahni shared her story with her classmates. Many of them had never even known she had cancer at one point.

“I obviously know her story, I lived it,” Kiara said. “But hearing it come from Kaylahni, because she only remembers what we had told her as she was only a baby, I couldn’t take it. I was like, ‘Well, my baby is growing up.’”

The Kaylahni Laboy family is paired with Delta Gamma and Delta Upsilon. Over the years girls from Delta Gamma have graduated from Penn State, grown older, gotten married, and had kids, but they and the Laboys still keep in touch.

“We’ve become a family,” Kiara said. “Kaylahni has her own relationship with all the girls now that she’s older, and she talks to them all the time. It’s awesome.”

A few of the Delta Gamma girls have come up to Kaylahni’s swim meets this year already. Kiara said that Kaylahni loves to drive around with them, listen to music, and talk.

“The fact that they’ve come down and made a point to spend time with us through a bunch of difficult situations has been amazing,” Kiara said. “It’s meant a lot.”

Four Diamonds has helped the Laboys throughout Kaylahni’s cancer journey as well. At the time of Kaylahni’s diagnosis, Kiara was only 19 years old and didn’t have health insurance. Four Diamonds helped the Laboys get Medicaid for Kaylahni and helped the Laboys pay bills after Kaylahni’s dad got laid off. They gave them gas vouchers to get to and from Hershey as well, and food vouchers so they could get food from the cafeteria while Kaylahni was in the hospital or receiving treatment.

“I’m so grateful for Four Diamonds, because without them, I feel like Kaylahni wouldn’t have been given a chance,” Kiara said. “The work that Four Diamonds does is incredible.”