FLETCHER — Fifteen-year-old Delaney Sweet-Werneke of Fletcher was born a fighter. As a three sport star athlete, she would always do whatever it would take to come off the field with a win. Now, sidelined from most of her passions, she has focused her determination on overcoming an even bigger battle. She’s fighting for her life.
Just two-years-ago, life was simple for Delaney and her family. She was a healthy and strong seventh grader who had just finished up a successful season on the basketball court, and was actively refining her catching skills behind the plate, preparing for the spring’s softball season at a pitching clinic. But she was experiencing pain in her hip.
The hip pain began sometime in March 2016. But it wasn’t until May 12 that she was diagnosed with osteosarcoma – a life threatening form of bone cancer.
“We went to all kinds of doctors. We went to her pediatrician. We went to a chiropractor, we went to a physical therapist. We had x-rays on April 1,” Karrie said.
After analysis of her x-rays, the doctors saw nothing unusual and sent Delaney back to physical therapy. But when the pain in her hip wasn’t getting better, a frustrated Karrie demanded answers.
“Finally, at one of the appointments with a specialist we refused to leave the room. I asked the doctor to pull up her x-rays again,when he took one look at them and requested an emergency MRI,” Karrie said. “The very next day she got an MRI, and the day after that we got the call that she had a large tumor in her hip.”
Delaney’s delayed diagnosis is something that happens to a lot of Osteosarcoma patients. According to St. Jude’s Children’s Hospital, many symptoms appear weeks to months before doctors finally determine the cause because they are so similar to everyday, stress related injuries. In Delaney’s case, the concentrated hip pain appeared to just be a sports injury.
“We weren’t alone. I’ve talked with numerous parents who have said they tried and tried to find out what was wrong, because a lot of these kids are so active and busy, and the next thing they know something hurts,” Karrie said.
Osteosarcoma is a rare form of cancer, but it is more common in kids. According to the American Cancer Society, there are about 800 to 900 new cases a year. About half of these are in children and teens.
“It’s kind of like being hit by lighting. But, Delaney had it in her pelvic bone, which was kind of like being hit by lighting twice, because only one to two percent of kids get it in their pelvic area,” Karrie said.
After her diagnosis in May, Delaney began nine months of intense chemotherapy at the University of Vermont Medical Center in Burlington.
“She was in the hospital for over 100 days, it took her out of school, she lost her hair, and she was just extremely sick,” Karrie said.
Delaney stopped chemotherapy just long enough to undergo a 12-hour surgery at Massachusetts General Hospital in Boston. Students came from all over the city, to watch as Dr. Kevin Raskin performed a miracle on Delaney’s hip.
At 13, all Delaney wished was that she could step back on the soccer field after having this 10-centimeter tumor removed from her body. Raskin came up with a plan to remove her fibula bone from her leg into her hip, attach it with a cadaver bone and other hardware, with the hopes that it would be enough support for Delaney to one day be able to run and compete again. But Delaney says she knew the doctors were giving her a false hope.
“Dr. Raskin told me I’d never play again,” Delaney said before adding quickly after, “No, he didn’t really say that, but he sort of implied it.”
“There’s always hope,” Karrie said to her daughter.
Delaney responded with a shrug saying, “It’s sad. I cried a lot.”
Two years later, Delaney has come to terms with the end of her soccer career, but Karrie’s hopeful outlook doesn’t go without reason. There were a lot of things Delaney was told she’d never do again, but just weeks after the surgery she was shocking even Raskin, who is not only an acclaimed orthopedic surgeon but also a Harvard professor.
“They told me I was never going to be able to put my socks on again. They even gave me this sock thing to help,” Delaney said with a scoff before shrugging, “But I can put my socks on just fine.”
According to Karrie, the surgery was more than successful. During follow up appointments she says many students would film Delaney as she walked and say how amazing it was.
“He [Raskin] spent so much time and effort moving muscles during the surgery, trying not to cut everything so she [Delaney] could have as much use of her leg as possible,” Karrie said. “He did an amazing job, she has scars and a limp, but she has her leg.”
The entire tumor was removed from Delaney’s hip, and test results showed there were no remaining cancer cells in the body. She returned home and completed her chemotherapy on Jan. 2, 2017. She started to heal and began learning how to use her new hip while returning to school.
In October, Delaney relapsed. The cancer came back in both of her lungs. In December, she went back to Boston to have a thoracotomy, where the doctors removed three cancer spots. During this procedure, Delaney had to be cut open between her ribs, her lungs deflated as doctors felt with their hands for the tumors. She had this done twice.
“It’s an extremely painful procedure, and we were told she would be in the hospital from anywhere between three to ten days,” Karrie said. “But she’s like a machine, she was out both times by the third day.”
After the procedure, Delaney began chemo again in February. This time the treatment wasn’t as intense, allowing her to keep her hair and go back to school. After six more months of chemo, Delaney went in July for another scan where they told her the chemo didn’t work. Now, the family is consulting an extremely renowned pediatric oncologist at Cleveland Clinic. Having just returned from Ohio last Friday, the doctors found more spots in Delaney’s right lung. Although it’s still unclear if these spots are cancerous, Delaney will return to Cleveland on Sunday to begin radiation and then start up another round of chemotherapy.
But before she gets on a plane this weekend, she has something to look forward to.
This Sunday hundreds of people are expected to show up with balls and bats at BFA Fairfax for the 2018 DSW Strong Softball Tournament. Organized by Kristine Irish, this event is in its second year, and it’s all to help financially and emotionally support Delaney and her family.
“We did it two years ago, at the time when Delaney was still sick in the hospital. I promised her we would run it again when she could actually play,” Irish said.
This year Delaney is set to play.
“I haven’t played softball in a while,” she said with a smile. “I need to start practicing.”
She plans to have her 12-year-old sister, Malayna, pinch run for her in the tournament.
Malayna, who was just 10-years-old when her sister was diagnosed with cancer, is just one of Delaney’s lifelines.
“She’s always there,” Delaney said quietly.
“She is another huge support,” Karrie said with a nod. “She’s been there every step of the way, sleeping in tiny beds with their dad in the hospital. It’s turned her life upside down, but she’s always there.”
Delaney also leans on her two best friends, Abby and Bella, and her boyfriend, Cameron, to help her stay positive and strong. Additionally, Karrie mentioned families like the Degree family, who spent multiple holidays in the hospital with Delaney.
“There’s really just so many people who have helped us, even if it was just holding the fort down at home, I can’t even name everyone,” Karrie said.
The unwavering support Delaney has received from both her family and close friends is part of the reason community members have stepped up financially. Both Karrie and Delaney’s father, Bill, never left her side when she was first undergoing chemo, and they were always there to transport her back and forth to Boston and now to Cleveland.
“There’s been a lot of work missed,” Karrie admitted. “And insurance doesn’t cover travel costs.”
Making matters more difficult, Delaney’s father works four months out of the year in Alaska as a hunting and fishing guide. He is currently working there now.
“He’s more than ready to come home and can’t stand being away, but we need the income,” Karrie said.
This is another reason Irish said she stepped up to the plate to make DSW Strong happen.
“No one wants to leave their child who’s fighting for their life, so we’re trying to do everything we can to help,” Irish said. “The Fairfax and Fletcher community, and then the extending Franklin County community, are just amazingly giving people. When someone goes through a hard time around here everyone rallies to see what they can do.”
Both Karrie and Delaney are beyond thankful for the support.
“People will just randomly send us something,” Karrie said. “She’ll randomly get a bracelet or a donation to go do something fun, and they even remember Malayna. It’s not just once; they help more than once. It’s amazing how much the community has come together, and a lot of them we’ve never even met before.”
The softball tournament begins at 8 a.m. on Sunday. Though it’s too late to sign up, all spectators are welcome to come enjoy full concessions, some community and a chance to cheer on Delaney.
“She defies a lot of odds,” Irish said. “Our slogan is she can, she will, just watch her, and that’s pretty much her.”
Donations to Delaney and her family can be made out to Delaney Sweet Werneke and mailed to DSW Strong, PO Box 211, Fairfax, Vt. Questions about the tournament or donations can be sent to firstname.lastname@example.org.