Community rallies around infant battling cancer at St. Jude

Fighting for her life, little Caylie Berry continues to undergo treatment at St, Jude Children’s Research Hospital in Memphis. Photo courtesy of Kayla Berry

At first, there was joy.

Caylie Berry was born on December 23, 2019, to Kayla Leigh Smith and Scott Berry of the Richland Springs section of Saluda County.

She was welcomed home by her 4 year-old sister, Charleigh, and other loved ones. Caylie was precious and seemed like the perfect newborn infant. However, several months after her birth, at the beginning of May 2020, Caylie became sick and was diagnosed with bilateral ear infections. She was treated with medication.

Two weeks later, she was not getting better, so after another doctor’s visit, Kayla and Scott were told that Caylie still had an infection in her left ear. She again was treated with medication.

A couple of days later, Caylie was unable to hold her head up. Kayla and Scott took her to Prisma Health Children’s Hospital emergency room, thinking she may have meningitis. Due to COVID-19 restrictions, Kayla was able to stay with Caylie, but Scott was not. Kayla was all alone with Caylie when she was told Caylie had torticollis and would eventually outgrow it.

“I didn’t believe this and would not leave the hospital until they did more testing,” Kayla said.

After testing, Caylie was found to have a large mass on the back side of her head in her left cerebellum. “I was shocked and in disbelief, and my husband could not be there by my side,” Kayla added.

The doctor admitted Caylie to the hospital, and they allowed Scott into the hospital to see his daughter.  Scott and Kayla were told that the prognosis was not good.

“Scott and I sat there and cried,” Kayla said, “because the one thing we wanted to know was the one thing they could not tell us: Was our daughter going to be okay?”

An MRI the following afternoon showed that the tumor was not attached to Caylie’s brain. Surgery was scheduled for May 19.

Little Caylie made it through the grueling 5- to 7-hour surgery fine, and the surgeon informed her parents that the tumor looked to be cancerous, but they would have to wait for pathology to confirm that.  Two days later, results showed that the tumor was indeed cancerous, but the doctors were unsure of exactly what kind of cancer it was. They sent the pathology results to the Mayo Clinic.

“For three weeks, we waited before finding out it was an embryonal tumor,” Kayla said. “We were given one option – to send her to a clinical trial in Charleston. This trial would be very hard on her body and would probably kill her. I wasn’t ready to plan a funeral for my 5 month-old and have to explain to her sister that Caylie wasn’t coming home.”

That is when the family contacted St. Jude’s Children Medical Center in Memphis, Tenn. St. Jude’s agreed to meet Caylie, and on June 10, the family traveled to Memphis. St. Jude’s did their own testing and on June 14, Scott and Kayla were told Caylie had two new tumors on her spine. Chemotherapy needed to be started immediately.

Aerial view of the St. Jude Children’s Hospital campus

The doctors told them that embroynal tumor with multilayered rosettes is the worst tumor to have. The first day of chemotherapy was June 16. She received 24 drips of chemo one day, then on Days 8 and 9 she received another part. On Day 15, she received the last dose.

The chemotherapy has been difficult on Caylie’s 7-month-old body, and she is sick all the time and irritable. Her medications are given through a central line, which makes her more prone for infection.

After 28 days of chemotherapy, scans showed that one tumor was shrinking and another was gone. Her brain was still clear.

“We felt like prayers were being answered,” Kayla rejoiced. More scans will be repeated on Aug. 11.

Scott, Kayla, Caylie, and Charleigh’s lives have changed overnight. Charleigh is having a challenging time being away from family and friends. She was supposed start school this fall, but she will have to be homeschooled for now.

Kayla says that the family’s daily routine consists of giving Caylie her medications, dealing with Caylie crying from not feeling well, frequent bouts of vomiting from the treatments, and Caylie screaming at times when she is touched because the chemotherapy makes her skin sensitive.

“This takes a toll on a family. When we lived at home, our families were close and visited often, but now it is only us four so we face time as much as we can,” Kayla said. 

COVID-19 has changed many of the guidelines that St. Jude’s must follow to keep patients safe. Scott was allowed to stay at the hospital housing for five days and then was told he had to leave. The family moved into an apartment close by.  Along with these added expenses, the family still has a home and bills back home in Saluda County.

Kayla and Caylie are tested every five days for COVID-19, and neither Scott nor Charleigh is allowed in the hospital. Thankfully, family and friends back home have been supportive. Several family members, including Caylie’s grandparents, have been able to visit in Memphis, and the family has received lots of calls, cards, and much needed prayers. Both Kayla and Scott’s jobs are on hold right now, and hopefully they will be able to return to them at some point.

Here in the Batesburg-Leesville and Saluda areas, family and friends of Caylie are continuing to pray for healing and are busy organizing fund-raisers to help the family meet their mounting financial expenses.

“It has been difficult not being there with my sister and her family during this time when they need our support more than ever, however we do FaceTime often,” said Katie Smith, Caylie’s aunt. “We are thankful that we can help by organizing fundraisers and spreading the word on what their needs are right now.  The most important thing needed is prayers.”

One upcoming benefit fundraiser is on Aug. 8 at the Hollywood Ruritan Club. Plates include BBQ chicken, baked beans, slaw, roll, and dessert for $10. Pick-up is from 11 a.m. to 5 p.m. Contact Katie Rodgers at 864-344-2242 or Brittany Rowe at 803-724-7811 for tickets.

Several raffles are also going on including one for a 65-quart Yeti cooler, a gun, and a gas grill.  JC Outdoors is having a raffle for a Benelli SuperNova 3.5 shotgun as well as a 50/50 drawing going on until Aug. 15.

The future is uncertain right now for little Caylie and her family, but their faith in God remains strong.  They are supported by their many family and friends and are looking forward to when they can return home and Caylie will be healed.

Let us all come together as one community and help this sweet precious baby and her loving family.