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patient story

Kayleigh Truster

the Trusters find strength and hope in a difficult time

Mallory Truster took her 9-month-old, Kayleigh, into what she expected to be a typical well-child check. During the exam, their pediatrician noticed that the soft spot on her head was starting to bulge. They referred Kayleigh for an ultrasound, and found that her ventricles were enlarged. Kayleigh was admitted to Dayton Children’s to have an MRI, then a shunt placed to help with the swelling.

Unfortunately, there was more to the story. During Kayleigh’s MRI, her neurosurgical team, including Shobhan Vachhrajani, MD, PhD, FRCSC, found Kayleigh had a tumor. Kayleigh immediately went to surgery to remove the tumor. At this point, Lionel Chow, MD, PhD, joined the team as Kayleigh’s oncologist.

donating to brain tumor research

Dr. Chow specializes in brain tumors. He works with Dayton Children’s neurosurgeon Rob Lober, MD, PhD, FAANS, to conduct research on how to best care for patients who have a brain tumor. The Trusters were offered the chance to be part of their research, and have a sample of Kayleigh’s tumor studied to determine its genetics and therefore how to best treat it. Her tumor would be housed in the Living Biobank, where tumor samples are collected, tested and grown at Dayton Children’s then shared with researchers all over the world. The goal is to improve treatment for children with brain tumors, both by curing more patients and by reducing side effects of treatment.

“Patrick (Kayleigh’s dad) and I didn’t even hesitate when they asked if we wanted to do this,” Mallory said. “It seemed to only be helpful, whether for Kayleigh or another child. In the moment, we felt so helpless and out of control. This was something we could do that brought a little bit of light to a moment of darkness.”

During surgery, the neurosurgeons removed Kayleigh’s tumor completely, and sent a piece of the tumor to be studied. Then, Kayleigh was admitted to the PICU and the Trusters met Dr. Chow there.

a supportive care team

It can take time to figure out the right combination of medicines to help make patients feel more comfortable. So, the treatments were pretty difficult at first but got much better as the team found the right “recipe” for Kayleigh. The whole care team at Dayton Children’s quickly started to feel like part of the Trusters’ family.

“Kayleigh was very weak on her left side as a result of her surgery, and also needs some extra help with language skills. Physical therapy and speech therapy have been a big part of Kayleigh’s care, and she is getting a lot stronger and chattier. Child life has also been so special. One day Lindsey from music therapy came in when Kayleigh was just starting to move more. Kayleigh would bounce and Lindsey would play faster, then Kayleigh would sway and Lindsey would play slower. Kayleigh realized she could influence Lindsey’s playing and just loved it!”

looking ahead

10 months into her treatment, Kayleigh is doing great. She continues to have MRIs, and they’ve all come back with no cancer. She loves exploring the world in her walker, and is starting to say some words from her favorite movie, "Moana." Her older siblings are also a great motivation for her to build up her strength and communication – she wants to do whatever they’re doing!

Over time, Mallory’s perspective on Kayleigh’s diagnosis and her family’s journey have changed. “People say ‘Oh my gosh, I would never be able to do that.’ I felt the same way,” Mallory said. "You don’t know the strength you have inside of you until you have to use it. It’s really amazing. You can do it, because you have to do it. It’s surreal to sit here and say that, compared to where I was when I started out. It truly is because of the people we have around us. Everyone knows how to help us through it, and has been there to support us.”

The research in Dr. Chow’s and Dr. Lober’s laboratories is supported by the Gala of Hope Foundation.