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Optimism and Persistence Propels A Competitive Horseback Rider’s Unexpected Journey

For 14-year-old Kailey Paul, unwavering optimism and perseverance has propelled her through the tribulations of her teen years, horseback riding competitions, and an unexpected cancer journey. In August 2022, Kailey was diagnosed with medulloblastoma, a rare and aggressive form of brain cancer. In the midst of a competitive horseback riding season and on the brink of her freshman year of high school, the active teenager surmounted these challenges like a champion.

Early that summer, Kailey was preparing to compete in a horse show in her hometown of Albany, New York, and was experiencing neck pain and headaches. She went to her pediatrician, who ordered an MRI. “We were told to go immediately to the emergency room,” said Kailey’s mom, Donna. “They told us Kailey had a brain tumor causing swelling in her brain that needed immediate attention.”

 

At the Albany Medical Center, the pediatric oncologists and pediatric neurosurgeons told her parents, Scott and Donna, that they suspected Kailey had a medulloblastoma and would need surgery within 24 hours.

 

Soon after surgery, doctors wanted to begin radiation with weekly chemotherapy. On a follow-up MRI, the cancer team saw what appeared to be an additional tumor on the left side of her brain and discussed the possibility of a second surgery.

 

“We were very worried,” said Donna. “The doctors said the tumor was located in an area that controls motor skills. If she had the surgery, she would need physical therapy for walking and may not be able to ride again.”

 

That set the Pauls on a journey to explore alternatives to surgery, and they learned Kailey was an excellent candidate for proton therapy.

Proton Therapy Targets the Tumor with Minimal Damage to Surrounding Tissue

The Pauls learned proton therapy could safely target Kailey’s brain tumor with less damage to tissues outside of the central nervous system and with fewer side effects than traditional radiation.

 

After the family’s consultations at Memorial Sloan Kettering Cancer Center (MSK), Albany Medical Center, and with the New York Proton Center’s (NYPC) Dr. Shaakir Hasan, “Kailey decided to hold off on the second surgery and start proton therapy, because surgery could always be on the table,” said Donna.

 

Medulloblastoma treatment requires that radiotherapy be delivered to the entire central nervous system since the brain and entire spinal cord are at risk for recurrence. With proton therapy, all delicate anatomy in front of the brain and spinal cord – from the eyes to the heart and lungs, to the stomach, to the bladder and reproductive organs, all receive virtually no additional radiation compared to photon-based radiation.

 

The Pauls ultimately decided on NYPC for proton therapy and “the most important deciding factor was meeting Dr. Hasan,” said Donna.

 

Dr. Hasan specializes in proton therapy for pediatric malignancies, prostate cancer, and lymphoma. “Dr. Hasan explained that the purpose of proton therapy was to cure Kailey’s cancer,” said Donna.

 

“We asked Dr. Hasan about the effectiveness of proton therapy,” said Donna. “He explained it safely and effectively eradicates the tumor, with precision down to a few millimeters. He said Kailey could do the proton therapy without doing a second surgery, which was very reassuring.”

 

Typically, up to 70% of patients who receive photon-based radiation for medulloblastoma experience clinically significant side effects such as nausea and vomiting. At NYPC, Kailey received 30 proton treatments to the brain and spinal cord, and she cruised through the entire course without any side effects.

 

Kailey continued to compete in horse showing competitions throughout and after her proton therapy. “Kailey is really unstoppable,” said Donna. “She never lets her cancer or her treatments upset her; she just takes it day by day.”

Learn more about proton therapy for pediatric cancers
“It wasn’t until we spoke with Dr. Hasan and the doctors at MSK and Albany Medical Center that we felt like there is an actual cure for Kailey’s cancer.”

A Staff That Feels Like Family

In the fall, Kailey began six weeks of daily proton therapy sessions at NYPC, which soon became their home away from home. “We really felt like the Proton Center staff was like family,” said Donna. “Everyone truly cared about Kailey and us, too.”

 

Maria Martin, CCLS, Child Life Coordinator, painted a penguin on Kailey’s face mask that she wore while receiving therapy. “Maria made Kailey feel so comfortable when we had that first mask fitting,” said Donna. “That was a frightening day for us, because it was really hitting home that this was going to happen.”

 

Other key members of the NYPC team included Arthur De Souza, RT, one of Kailey’s radiation therapists, social worker Chrissy Rubin, LCSW, and therapy unit coordinator Shawn Giordano.

 

“Chrissy really assisted us with temporarily relocating to NYC for Kailey’s treatments and made us feel at home,” added Donna. “We had a few logistical issues when we first arrived, like where to park, how to get back and forth to NYPC, who to talk to about therapy, and Chrissy sat down with us and helped us every step of the way.”

 

“Arthur helped Kailey with her mask and made her feel comfortable on the treatment table,” said Donna. “He was just so positive about everything. Kailey looked forward to seeing a familiar face daily and it helped  her relax.”

 

“Shawn was great. He helped us with scheduling Kailey’s treatments and tried to accommodate when we had a conflict,” said Donna. “My husband and I would often sit and talk to Shawn while Kailey was getting her therapy,” said Donna. “It made the time go by so pleasantly.”

 

Since beginning proton therapy, Kailey has had two follow-up MRIs that demonstrated no evidence of residual or recurrent disease or damage to sensitive tissues from the proton therapy, and Dr. Hasan is pleased with her progress.

Back to School and a Full Teen Life

Today, Kailey’s optimism and persistence is helping her through ninth grade at a new school, all while navigating her treatments. She looks forward to this summer, when she will resume competitive horseback riding and begin showing her new horse, Elon.

 

“I also just got a Leonberger puppy,” said Kailey. “I want to train the puppy to be a therapy dog, so that one day I can bring her to the hospital and help other children who are sick. That day can’t come soon enough!”

Hear more from NYPC patients
From proton therapy to kindergarten. Meet Thomas.
Resuming an active life after a spinal tumor. Meet Sara.
A honeymoon awaits after facing Hodgkin's lymphoma. Meet Jack.

How can we help?

Want to find out if proton therapy might be a good fit for you or your patient? Call us at 833-NYPROTON (833-697-7686) or fill out the appropriate form below.