RACINE — Starbuck Middle School student Jacob Ferch was tired, had headaches and was throwing up last November. His mother, Nichole Taylor, brought him to see a doctor and the doctor said it was just a bug.
But then Ferch didn’t get better. He continued to throw up “for no reason,” Taylor said. She brought him to see another doctor and this one said it could be the increased time in front of computer screens during virtual schooling.
Taylor reduced her son’s screen time usage and his sickness still didn’t let up. Even after several other doctor visits, it wasn’t until a barber alerted Taylor to many bumps on her son’s head that she knew she had to get help right away.
Almost a year after his initial sickness began, Ferch had a baseball-sized malignant tumor removed from his brain, was recently diagnosed with anaplastic ependymoma, a type of cancer where cells in the central nervous system begin to multiply rapidly, and is preparing to undergo chemotherapy and radiation in Memphis. Ferch and Taylor left Tuesday.
Despite being states away, they have support.
His best friend’s mother, Katie Cranley, started a Meal Train site (mealtrain.com/trains/k14wqv/) to raise money and implement a schedule of people bringing food to the family. Meal Train is a website that organizes meal giving and fundraising by matching the needs and requests of the recipient with the availability of donors.
Cranley, who is a diagnostician and program support teacher at Racine Unified School District and whose husband died four years ago, said a Meal Train page helped her family then. She wanted to pay it forward.
“We just want to help Jacob and his family, that’s all we really care about,” Cranley said. “This is a really horrible thing and anything we can do to lighten the blow would be awesome.”
From bad to worse
Months ago, Taylor tried bringing Ferch to a gastrointestinal doctor, where Ferch had ultrasounds and lab work done. He was participating in routine visits every month.
The gastroenterologist didn’t find any winning solutions to Ferch’s problems. Ferch was prescribed anti-nausea medication, which didn’t seem to help.
Ferch began to fear eating; he knew he was just going to throw it up again. He lost a lot of weight. He slept a lot. He almost snoozed a consecutive 36 hours once and missed a family gathering.
But then he started feeling more like himself two months ago. He was playing with his three younger siblings and seemed to be enjoying life. The symptoms would be intermittent; he’d be fine one week then sick the next. But within the last month he started acting like an 80-year-old man, Taylor said.
He was less mobile, weak and reported his hand going numb.
“He never said anything. He is a sweet kid and keeps everything in,” Taylor said, noting she asked her son in disbelief why he didn’t say anything sooner. “When you’re walking like an old man, you grab on every little thing. His balance was really off.”
The gastroenterologist recommended an appointment with a neurologist, and so Taylor worked to schedule one. The next available appointment was a month or two away — pretty far out.
Then Ferch lost some sight, and couldn’t open doors. His vision was blurry and his depth perception was off.
“He has really deteriorated,” Taylor said.
Ferch got his hair cut when school started Sept. 1 and the barber asked Taylor if she noticed he had many bumps on his head. Ferch had been growing his hair out, inadvertently covering the large collection of cysts.
At that point, Taylor freaked out and knew she needed something to happen right away.
She got an MRI appointment, Sept. 8 at Children’s Wisconsin in Wauwatosa. Ferch came out of the MRI with an IV and went straight to the emergency room.
Diagnosis, surgery and recovery
The MRI helped doctors discover a tumor the size of a baseball, which had taken over more than 25% of his brain and eroded a part of his skull. The cysts were from the tumor protruding through.
He was diagnosed with anaplastic ependymoma after a tissue sample analysis. If he didn’t have the tumor removed, doctors said he would’ve started having seizures.
According to doctors, the tumor was putting pressure on his occipital lobes, which are located at the back of the head and are responsible for visual perception. The pressure caused his brain to swell and his eyes to bulge.
Taylor said the whole situation has been devastating.
“He was a young, healthy, 11-year-old kid. It’s been really hard,” Taylor said. “He’s just so sweet, just a good human being and kind kid. I was just in shock with the size, and he just never said there was anything wrong. He just went along with it with a smile on his face.”
The surgery, which was supposed to last 6-8 hours, instead lasted about 17½ hours.
“It was a lot more complicated than they anticipated it to be,” Taylor said. “They were so meticulous during the process. He came out of it alive. I definitely appreciate it. I’m so thankful they didn’t stop.”
He was prescribed steroids to get the swelling down, which helped. He’s now back to regularly eating.
St. Jude Children’s Research Hospital in Memphis offered to treat Ferch post-surgery. Staffers plan to keep him there for a few months for radiation and chemotherapy to hopefully eliminate any cancerous cells left. Ferch will have visits every few months after that for follow-up treatment.
He will be receiving physical and occupational therapy. He still has to wave his hands in front of him to see where he’s going.
Overall, though, he has recovered really well, Taylor said, although he’s having some mild mobility and balance issues because his vision is still not yet back to normal.
“It may be some time to hopefully recover,” Taylor said.
The Meal Train pulls in
Taylor hadn’t been working for 12 weeks due to maternity leave. Ten days after going back to work, she was back out because of Ferch’s complications.
“My brain has been crazy,” Taylor said. “My brain has been just scrambled, it’s overwhelming.”
That’s when Cranley stepped in and created the Meal Train page.
Cranley said Ferch is “such a great human being” and “so kind.”
“His mom is equally amazing. I couldn’t think of someone more deserving,” Cranley said.
Somers Fire and Rescue additionally heard of Ferch’s story and gave him a tour of the station and various trucks and tools, and gave him a ride in one of the newest engines. This was because “he informed us that he has always loved fire trucks and wants to be a firefighter when he gets older,” Somers Fire wrote in a Facebook post.
Somers Fire and Rescue started a separate GoFundMe page (gofundme.com/f/x58jc-donations-for-jacob) to raise money for whatever the family may need.
“In just our short time spent with him, we all could see what a special person he is,” Somers Fire wrote. “Good luck Jacob! Know that you will forever be a part of our Somers Fire and Rescue family and are welcome to come back anytime. We look forward to seeing you again soon!”
A friendship to help along the way
Ferch’s friend Payton Schoenung said she was extremely upset when she heard about Ferch’s diagnosis because she was halfway through school at the time. She was distracted by the news and was very worried about him.
Ferch met Schoenung when they were students at Red Apple Elementary School. Ferch now attends Starbuck Middle School, and Schoenung attends Walden III Middle School.
“He was just a real nice kid that was willing to listen and we had a lot of things in common,” Schoenung said, calling Ferch her only nearby friend.
Schoenung’s mother, Katie Cranley, noted that her daughter doesn’t make friends easily.
“When she did make a friend, we took it seriously,” Cranley said. “We tried to do what we could to support the family because they’re important to us and they’re important to Payton. Anybody that really reaches out to her and she connects with is an awesome person in my book.”
The meals from the Meal Train schedule have been helpful in that her children don’t have to eat spaghetti every night, Taylor said. She’s been with Ferch a lot at Children’s, she said, and the meals help give her children the variety of nutrition they need.
Meal Train money raised will cover some medical bills and flights for siblings to visit their brother in Memphis.
“He’s an important member in our family. We want to make sure that remains intact and the relationships stay close,” Taylor said. “I expect to get a $1 million bill for a 17½ hour brain surgery from Children’s.”
She’s very appreciative of the Meal Train efforts and said the community rallying behind her and her family is “heroic.”
“It’s overwhelming because you think this sucks for your family. No one is obligated to care. When people do what they can to help, even though we haven’t met, is just mind blowing. I have soldiers behind me who are helping me push through this battle.”
While Ferch was at the hospital and since he has come back, Ferch and Schoenung have visited with each other.
“She was a good friend to Jacob, and even after this she’s been an amazing friend,” Taylor said.
“I’m just happy to know he’s doing better,” Schoenung said, “and that he’s getting the attention he needs for him.”