Copperas Cove boy battles cancer
By BRITTANY FHOLER
Lynda Jo Skipper, a Copperas Cove mother and a nurse, knew something was wrong with her son, Kenyon, when he stopped gaining weight and started complaining of pain in his left leg.
Kenyon’s pediatrician had diagnosed him with failure to thrive when he stopped gaining weight and plateaued at 36 pounds for three years.
Skipper took Kenyon to see an orthopedic specialist who did an X-ray but couldn’t find anything wrong. The doctor wanted to do an MRI, but Skipper’s insurance would not approve the MRI until other options, like physical therapy, were used first. Skipper said she and Kenyon were sent to doctor after doctor who placed him on appetite stimulants and ran bloodwork, but all tests came back normal.
Skipper said the pain her son was describing sounded neuropathic, similar to what some diabetes patients suffer from, and she wanted him to see a neurologist.
In December 2019, Skipper finally was able to have Kenyon seen by a nurse practitioner with the neurology department who requested an MRI of Kenyon’s brain and spine. In January 2020, the MRI showed that Kenyon had spinal nerve sheath tumors.
Now nine years old, Kenyon was diagnosed with plexiform schwannoma, one of three types of schwannomas. It is kind of tumor that develops from the Schwann cells around the nerves, according to the Cleveland Clinic.
Kenyon’s tumors were so large that they had remodeled the bone in his sacrum, the large, triangular bone at the base of the spine, and had caused a large mass effect on his psoas muscles, the deepest muscles in a person’s core and attach from the 12th thoracic vertebrae to the 5th lumbar vertebrae.
“We knew he had tumors, but we didn’t know what exactly it was until they did the pelvic biopsy,” Skipper said.
After seven more MRIs and results confirmed by three other hospitals, he and his mother started seeing different doctors at Baylor Scott and White Medical Temple to come up with a plan for surgery.
Then, the COVID-19 pandemic stalled everything, including all elective surgeries.
“When everything opened back up, they put him first on the schedule, because I had been keeping in contact with them about how the tumors were causing more pain,” Skipper said. The pain spreading from his feet up his leg paired with the fact that he still wasn’t gaining weight turned the surgery from elective to necessary.
On July 13 Kenyon underwent an 18-hour surgery to reach the tumors, with the tumors being larger than expected.
“If you can just imagine a 36-pound nine-year-old with tumors so large that you can feel them through his abdomen,” Skipper said.
The doctors were able to take 95 percent of the tumors out, but there are some too entangled in Kenyon’s nerves to ever be removed, Skipper said.
“They prepared me that we would probably make this worse for his function before it got better, just because of all the spinal manipulation,” Skipper said.
Currently, Kenyon is not able to walk. He can bend his leg backwards at the knee and can move his foot, but cannot lift his leg or kick it forward. With the surgery, the doctors had to remove a lot of Kenyon’s sensory nerves, so it’s unlikely he will regain feeling in some parts of his leftleg.
The next step for Kenyon is focusing on physical therapy to help get his legs working again, but there is a possibility he won’t ever regain that function, Skipper said.
The newly single mother of four explained that she ended up exhausting all of her FMLA, PTO and short-term disability leave earlier this year for her maternity leave with her infant son. As a result, she was only granted one week at home with Kenyon and has to return back to work next week.
“I was very angry for a while about how long it took to get my son’s diagnosis, but I realize it’s so rare that it probably, I don’t know that there would have been a much different outcome,” Skipper said. “It probably would have been a lot different if I hadn’t been a nurse and not pushed for what I knew was right and listened to my instincts, but from what I’m told this is the youngest case they’ve ever seen and the first that they’ve ever seen in the spinal nerves.”
Skipper added that this was even more rare in that it appears to be a spontaneous gene mutation, with no hereditary component.
“They believe he’s probably had these tumors since before he was born, so it’s just that they didn’t manifest until they got so big that they started causing problems with his function,” Skipper said.
Skipper said she does not want to shame the doctors who didn’t catch the tumors early on or make them feel like they didn’t do enough.
“There was a point where I was really mad, I was really angry, I was really sad, and a lot of things crossed my mind, but at the end of the day, I feel like nobody was negligent per se,” Skipper said. “They just didn’t know what they didn’t know, and sometimes it takes a parent to be pushy and advocate for what they feel is best for things to happen.”
Skipper’s cousin Jessica Beall set up a GoFundMe to raise money while Kenyon fights this battle. Skipper said she was just humbled by the fundraiser and wasn’t surprised that Beall would create a GoFundMe. The link is https://gf.me/u/ygfp68.
The family has also set up a meal train. People can sign up at https://mealtrain.com/g4m3we.
Another way people can support Kenyon and his family is by donating to an account that will be set up at Extraco Banks in Copperas Cove. It is a benefit account, where people can donate money by cash or check that will go to Kenyon.
“Usually, when somebody goes through a hardship, we do a benefit account and that will benefit them for the first 90 days and then after that, it will be closed down,” said Sabrina Brightwell with Extraco Banks. “We were wanting to set up something for him on a permanent basis. His grandmother is a customer of ours, so we wanted to help out the family in getting any donations directly to them in Kenyon’s name.”
Skipper said that Kenyon is doing great and has been strong going through this.
“He’s done so well with his therapy, it feels like he’s getting better every day, and I feel like at some point, he’ll be able to walk again,” Skipper said.
Kenyon loves to receive mail and loves to read the cards people have been sending.
“He’s enjoying getting the cards and reading them and asking me lots of questions about who these people are, and sometimes I’m like, ‘I don’t know. They’re just people who, they read your story, and they think you’re awesome, so they want to encourage you to keep going with your therapy and doing all the great things that we know you’re going to do later,’” Skipper said. “He just has such a big heart. It’s hard that he’s going through all of this stuff, but he just keeps going. He stays positive and keeps doing everything we ask him to do.”
Those interested can send Kenyon mail at 797 Raine Dr., Copperas Cove, Texas.