Kayleigh was nine months old when her mother took her to a well-child visit and her pediatrician noticed her soft spot on her head was starting to bulge. An ultrasound revealed her ventricles were enlarged, so doctors referred the Trusters to Dayton Children’s Hospital to have an MRI scan and a shunt put in place to help swelling.
Doctors at Dayton Children’s Hospital, though, found Kayleigh had a brain tumor and diagnosed her with infantile glioblastoma. Instead of getting a shunt, she went right into surgery.
Glioblastoma is an aggressive form of cancer occurring in the brain or spinal cord, but Kayleigh’s subtype is rare.
“It does have a better diagnosis than the glioblastoma that most people are familiar with,” Mallory said. “The fact that she was young and had this type was actually a really good thing.”
Doctors at Dayton Children’s removed the tumor in Kayleigh’s brain the same day she went in for her MRI. Doctors then said she would have to go through between 12 and 18 months of chemotherapy afterwards, and Kayleigh ended up going through 17 months.
“It was rough at first,” Mallory said about the chemotherapy. “And them being so little, they can’t really tell you what’s going on.”
Mallory said the staff there helped them through this part of Kayleigh’s health journey.
“I couldn’t have done it without these people that were placed in our lives on the oncology unit because they just were amazing,” Mallory said. Staff prepared Kayleigh’s family that the first couple of months can be rough until they could determine what other kinds of medications worked for Kayleigh to help reduce some of the side effects that come with chemotherapy.
Kayleigh’s parents also allowed part of the tumor to be sent to Dayton Children’s Living Biobank, where tumor samples are collected, tested and grown at Dayton Children’s and then shared with researchers all over the world. The goal is to improve treatment for children with brain tumors by studying its genetics and how to best treat it.
“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.”
Kayleigh is still going in for check-up appointments as doctors continue to monitor her long term, but her mother says she is doing well.
“She is a happy, thriving two year old. She’s loving life,” Mallory said.
The Truster family is also grateful for all the support they have received from the community. That support includes a roofing contractor, Evans Home Improvement out of Wapakoneta, providing them with a new roof for their home in St. Mary’s.
“They were able to get us on the schedule, so we were going to get a new roof before winter, which was like a huge relief,” Mallory said. The contractors came back a week before they were scheduled for that work to let the Trusters know the company was going to cover the cost of the roof.
“It was just absolutely amazing. We totally didn’t expect it at all. I was just blown away by that,” Mallory said. “So it’s just those kinds of things where people just show up to support you. And I think that’s one of the biggest things that we’re grateful for this holiday season is all of the people that helped us through this tough time and made it better.”
Christmas is also a little extra special this year for the Truster family — which also includes Kayleigh’s brother, Nick, and sister, Kelly, who are eight and three years old, respectively — after Kayleigh has come through her health journey.
“We just feel blessed to be able to still be together as a family, and I think when you go through a tough journey like this, I think we all feel more appreciative of even just the simple things in life,” Mallory said. “Being at home together as a family is just, I think, way more enjoyable now.”
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