Aiden Fullenwider celebrated his 12th birthday on January 21st this year, and then he and his family prepared for his 6 weeks of treatments. He has a diffuse type of brain tumor, and endured whole brain radiation in February and March, followed by chemotherapy.
“He is so brave, how he’s faced this as a kid,” his mom, Kaylie, said. “Aiden always smiles, and so people would assume that the journey has been easy. No. It’s been very hard, even for him. We’ve gone through a lot of emotions. It hasn’t been easy, but he’s stayed really positive through the whole thing.
I’ll say, ‘We have to start chemo. Are you o.k., Aiden?’ And, he’ll say, ‘Yeah Mom, we’re good. I can do this. I’ve got this.’ He has lost 20 pounds and doesn’t have a hair on his head. I’m amazed by him, really. He takes it all in stride. I have a very strong faith in God. That has really, really helped me, and I know that’s going to get us through this. I’ve drawn a lot of strength from that.
There’s a lot of uncertainty about the timeline, and that’s what makes this hard. We don’t know what the next 6 months are going to look like for us. We tell people to pray for a miracle. They ask what to pray for, and we say, ‘We need a miracle.’”
The initial discovery that something was off with his health occurred in April 2022, when his father, Casey, took Aiden and his siblings, Lynlee and Liam, for routine eye appointments. After scanning his optic nerve, the doctor advised his parents to take him to the ER. They were shocked when the MRIs showed brain swelling (encephalitis), and optic nerve swelling (papilledema), because he was showing no signs of illness.
That night, they were taken by ambulance to Norton Children’s Hospital in Louisville, where teams of doctors tried to find the cause of swelling. He had a Lumbar Puncture the next day, revealing he had increased cranial pressure. He started on medication to fix the ocular swelling, and the MRI showed a spot that looked like a smudge on the screen. Aiden had his first brain biopsy, and all of the doctors were still uncertain of what it was. He was in ICU for 24 hours following surgery, and then they returned home to wait for answers.
The pathology report stated that it was a DNET (Dysembryoplastic neuroepithelial tumor), and they were relieved, because that is a benign, slow growing tumor. They followed-up with neurology and neurosurgery, and although doctors didn’t believe the scan looked exactly like a DNET, they advised going with pathology and simply monitoring it. In July 2022, Aiden’s ocular swelling was getting worse and he was losing vision in his peripheral fields. Another MRI showed that the smudge had spread a little, but the doctors reassured them that it was nothing to worry about.
“They talk about a parent’s intuition,” Kaylie said. “As the appointments progressed, but his condition was not getting better, Casey and I had the strong intuition to get another opinion. I called our pediatrician and had a referral sent to Cincinnati Children’s Hospital.”
At first, the doctors at Cincinnati agreed with Norton’s findings. Then, the oncologist, Dr. Graham, said that everything about it did not seem like a textbook DNET, and recommended they monitor it in Cincinnati for the next year. “I thank God daily for his insight and his hunch to monitor the tumor,” Kaylie said. “Because, when it was time, we were at the right hospital at the right time. We scheduled our routine MRI scan for November. We connected with a neuro-ophthalmologist that finally was able to get Aiden’s papilledema better, and for the first time in the year, he was finally getting better.
Our first scan in Cincinnati was right after Thanksgiving. Aiden had been doing so well, it was a gut punch when our oncologist called us. The tumor had grown so much that he wanted to do another biopsy to know exactly what we were facing. Less than a month after playing football (offensive line, All Star season), my son had a craniotomy and resection. He was in surgery for a total of 6 hours. We paced the room, waiting and waiting for them to call our names for an update. Aiden did amazing, and once again, we spent 24 hours in the ICU. Then, we were sent home again to wait. This surgery was much more intense. The recovery was much harder than the biopsy in April.”
Because of how the tumor looked on the scan, his oncologist immediately advised them to schedule treatment. “After thinking for almost a year that we had avoided cancer,” she said, “he confirmed our worst fears. Our son had brain cancer.”
Aiden completed 6 weeks of whole brain radiation, and continued treatment with chemotherapy. “His case is not one that fits into any box, it never has,” Kaylie said. “We laugh and say that Aiden’s tissues have been looked at all around the country. Doctors at Stanford, New York, Arizona, etc. have looked at his case. We get asked often, ‘What kind of tumor is it? What stage is it?’ At this point, we’ve been given a prognosis and diagnosis, but we really do not share it, except with close family.
We are still in the process of really finding out more about the tumor. We’ve sought another opinion at Nationwide Children’s Hospital, in Columbus, OH. They are currently running even further testing to find out everything we can about the tumor. This could even change our current diagnosis and prognosis. We know that we have a long journey ahead, but we will keep fighting alongside Aiden. We’ve learned to live every single day as it is the last, and to not take a single moment for granted. Knowing we are not alone in the fight has meant the world. Since the time word got out that it was cancer, the community, our family, our friends, our coworkers, even strangers have reached out and poured out their love, prayers and donations.
Our families have been pillars of support for us. They’ve walked along this journey every step. The churches in the community have reached out and supported us. My fellow coworkers at HCPS, and North Hancock have shown again and again how they care for my family. HCMS has worked with us to make sure Aiden gets what he needs, and that he felt welcome coming back from radiation. His teachers reach out to check on him constantly. The generosity shown has made this journey better. I cannot imagine doing this without the support we’ve experienced.”
They attend Revive Community Church, in Hawesville, and Aiden enjoys the fellowship there. “They’ve been really good to us,” Kaylie said. “Aiden loves going to church there, because it’s little and everybody’s from Hancock County. He loves to spend time with family. On the weekends, when we came home (from treatments), that’s what he wanted to do, is spend time with family and friends. I think he draws a lot of strength from that. He has kept in contact with his friends. When we were in Cincinatti, he would game with them online. When we’d come home on the weekends, we’d have our friends and family over.”
Aiden is in the 6th grade at HCMS. “He was in school pretty consistently until December,” Kaylie said. “He had his major craniotomy and resection surgery at the end of December, and since then, he went on home health. He goes when he’s able. When you have full brain radiation, you’re exhausted. This week he went one day, but I picked him up at half a day.”
They were able to attend a couple of games in Cincinnati, before his treatment began. Aiden is a Chiefs fan, and got to see the Bengals play the Chiefs. “He loves going to Dave & Buster’s Video Arcade in Cincinnati,” Kaylie said. “He’s a big gamer. We would go when he felt well throughout radiation. He loved doing that. He loved finding hole-in-the-wall restaurants, until he lost his appetite. He’s a ‘Foodie,’ for sure.”
At the end of radiation, Aiden started to experience loss of appetite, and the chemo pill that he had to take at home, for the next step in his battle, also caused nausea. “We would offer to get him anything he wanted to eat, and nothing even sounded good to him,” she said. “We came home on appetite-increasing medicine, and he did great. Then, about 4 weeks out, we hit a wall again. It’s called somnolence syndrome, where you sleep and lose your appetite. We’re slowly recovering from that. Yesterday, he was able to eat like a normal kiddo again. The further out from radiation we get, it should get better.
Nationwide received Aiden’s tissues last week, and the genetic testing will tell us even more about the tumor. It takes 3 weeks. He has an MRI every 2 months. His last scan looked great, actually. The parts of the brain that were infected by the tumor almost seemed resolved, which was amazing, because they expected it to look worse. We’ll scan in June, to see how well this round of chemo did. If it worked, then we can start another round, while we wait for the genetics test from Nationwide to tell us even more about the tumor. The doctor said when they finally figure out what kind of tumor this is, if it is a different kind that they’ve never seen before, Aiden gets to name it.”
Casey & Kaylie extend a huge thank you to their families: The Huddy Family, Duncan Family and Fullenwider Family, to their aunts, uncles and cousins for their constant support, to their parents Bruce & Laura Duncan and Phil & Brenda Fullenwider, and to their siblings: Alisha & Tommy Ferry and Brice & Lindsey Duncan, for countless babysitting hours, and starting & managing the GoFundMe, and Todd & Amy Duncan for organizing a hunting benefit.
They extend a special thanks to HCPS for all their support, with a specific thanks to HCMS (Miranda Keown and the 6th grade team), NHES and Kelly Moore, and to Kendal Maxwell, Diana Lydanne, Sarah Greathouse, Heather Miller, Kelly Gray and Megan Jackson for organizing various fundraising events.
“Thanks to the countless strangers, including staff at Owensboro Middle School, churches and prayer groups outside the county who saw a family in need and reached out,” Kaylie said. “Thanks to the Hancock County community churches for their fundraising, donations and prayers. Last but not least, thanks to everyone who has donated through the account at Independence Bank and the GoFundMe. It has been an amazing outpouring of support.”
Benefit on May 13th
The Huddy family is planning a benefit for the Fullenwider Family on Saturday, May 13th at Immaculate Conception Hall from 5:00-8:00 p.m. The USW 9443 and Galaxy Pizza & BBQ are sponsoring the food. Tickets can be purchased from any member of the family.
“Our next steps include more treatment that may or may not require us to live and stay in Cincinnati or Columbus,” Kaylie said. “One option we have is a clinical trial in Columbus that would require us to relocate for a period of time. Thus, prompting the benefit my Huddy family is organizing.”
Kaylie teaches 4th/5th grade reading & social studies at NHES. “I worked consistently up until December 2022,” she said. “It was hard to tell my students that I was going to be gone. Our son, Liam, is 10 and in 4th grade this year. I was his teacher. I’m not there anymore, and it was hard on him. Aiden is his best friend. They’re only 27 months apart. When they were babies, they shared a room. It was tough on Liam when Aiden and I had to stay in Cincinatti. Our daughter, Lynlee, turned 5 in December, and will start at NHES in the fall.”
Casey works in the North Casting Department at Commonwealth. “They’ve been great,” Kaylie said. “We’re going to take a trip in June. Casey asked for a leave of absence just to take the trip, and it was approved.” They are paying for their family trip this summer, out-of-pocket, through their savings, and only use donations for Aiden’s medical expenses (radiation, chemotherapy and medication), and for traveling and hotels while he receives treatments.
“He qualifies for Make a Wish, and he’s currently brainstorming ideas for what he wants,” Kaylie said. “I’ve taken my leave to care for Aiden, but I’ve gotten paid leave. I made it on my sick days until mid-January. Since then, I’ve had days donated to me, which is just overwhelming to me, that people are willing to donate those. He’s been able to take every step with me there. The donated days came from across all the district. All of the schools, anybody could donate days to me. I don’t know who they are. I wish I could personally thank each one of them.
We are in a very cruddy situation, but to know that you’re so loved…We’ve learned through this that you need to tell people every single day that you love them. I’m not a touchy, feely person, but I’m gonna make sure my kids, my family and friends know- I love you guys.”
The link for Aiden’s GoFundMe is: https://www.gofundme.com/f/aidens-fight-against-brain-cancer. There is also an account set-up for donations at Independence Bank.
By Jennifer Wimmer