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‘She’s a little miracle baby’

Lake Asbury girl survives rare form of brain, spinal cord cancer

By Lee Wardlaw lee@claytodayonline.com
Posted 2/2/23

LAKE ASBURY – Katie Rose Hayes is a bright, active and extremely happy four-year-old girl. She’s a student at Pinewood Christian Academy and she excels in her two favorite activities – soccer …

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‘She’s a little miracle baby’

Lake Asbury girl survives rare form of brain, spinal cord cancer


Posted

LAKE ASBURY – Katie Rose Hayes is a bright, active and extremely happy four-year-old girl. She’s a student at Pinewood Christian Academy and she excels in her two favorite activities – soccer and music. A bright young little girl, Katie is surrounded by loving family members and has plenty of little friends, too.

Hayes has been enjoying life in Clay County since April 2020 with her mother and father. Before she moved here, her life was marred by a long, bumpy battle with cancer.

Shortly after her birth in 2018, doctors informed her parents, Tom and Mary Hayes, they weren’t sure if their little girl would survive after she was diagnosed with cancer with she was four weeks old,

The date was Oct. 25, 2018.

This was when Katie was diagnosed with glioblastoma multiforme, a rare and aggressive tumor that’s found in the brain and spinal cord.

Hayes was considered a healthy baby when she was born in September, but her parents were in for a grim surprise when they took her to the hospital in Volusia County. Katie was admitted with symptoms including a swollen head and continuous projectile vomiting. Hayes left the hospital with one simple recommendation for her parents: to switch from her previous formula to a new one.

However, after Hayes first-run in with health issues, her grandmother, Rosemary Wells, was onto something.

Katie’s mother, Mary Wells, can still recall Rosemary’s exact words like it was yesterday.

“Something’s not right. You need to call your pediatrician,’” she said.

The pediatrician advised Katie to return to the hospital, where the infant was diagnosed with hydrocephalus, a buildup of fluid within the cavities of the brain.

The next step, the doctor said, was a visit to the Orlando Health Arnold Palmer Hospital for Children. There, she received a shunt, a hollow tube that is surgically placed in the brain to help drain cerebrospinal fluid and redirect it to her stomach.

In the flash, Katie’s mother and father packed her up in the car and headed straight to Orlando. Mary thought her daughter was asleep in the backseat during the ride, but she would later find out that wasn’t the case when the Hayes family arrived at the children’s hospital.

Katie’s heart rate was dangerously low.

As soon as she arrived, she received a CT scan. That’s when Hayes received her grim cancerous diagnosis. The news of the scan results was confirmed in less than a half hour.

After evaluating her prognosis, a team of pediatric intensive care specialists came to the decision that Katie would be taken to surgery the next day – if she survived the night.

While it was a long road to recovery Hayes’ prognosis has drastically shifted course since.

Dr. Samer Elbabaa, a world-renowned pediatric neurosurgeon at Arnold Palmer, began the operation at 2 p.m on Oct. 26. The majority of a tennis ball-sized tumor that took up 60% of Katie’s brain was removed. That’s when the little girl started to fight back.

Cancer didn’t easily go away after that, the process requiring 10 rounds of chemotherapy.

However, on May 31, the nine-month-old child had the opportunity to ring the cancer-free bell at the hospital, signifying her final round of treatment.

The road to recovery wouldn’t have been possible without Elbabaa, who was responsible for conducting the risky, high-stakes surgery.

“She’s a little miracle baby. We firmly believe that God has big plans for her life,” her mother said.

After leaving the hospital, Hayes was given a new drug called Vitrakvi, which is prescribed for patients that test positive for particular genes that help cancerous tumors grow. The child took the medication from 2019 to 2020.

Miraculously, the child is now back to full health.

Katie will undergo another series of MRIs in February, but any suspected images are believed to be scar tissue. Past scans in 2021 and 2022 have also come to the same conclusion.

Along with her life being saved, several other miracles were included in Hayes’ prognosis during her fight with cancer.

“When (Katie) was going through chemo, they thought she was going to be very, very sick, but she wasn’t. She was just thriving and hitting her milestones,” the mother said.

Internal organ damage, complete blindness and hearing loss were to be expected, but instead, the child only has some deficiencies with her left-side peripheral vision.

Soon after her recovery, Hayes was hailed as a miracle baby by Elbabaa, his team, and the entire staff.

The story was especially intriguing due to the rarity of the disease in children and the long odds of her survival, her mother said.

Researchers found that only five children in the U.S. had previously been diagnosed with the disease 10 years before Hayes. Katie is the only GBM patient in Arnold Palmer’s history.

Hayes’ little fingerprints can still be felt in Florida and across the world.

Katie's story is now written about in medical books as a case study for other brain tumors, and doctors at Arnold Palmer still mimic the protocol used during her procedure when performing operations on other children to this very day.

Katie’s mother said that people have reached out from as far as Australia, Canada and Germany to inform her of how Hayes’ story has impacted their outlook on life.

“People are saying ‘If Katie can do this, I can do this’, even if it’s just something in everyday life. She has a ton of prayer warriors,” she said.