Seeing the end of cancer treatment is both a blessing and a curse for Katie Ware, and her daughter, six-year-old Lorelei Partin. They definitely won’t miss needle sticks and chemo treatments, but the doctors, nurses, caregivers and friends they’ve made along the way make the prospect of leaving hard.
After a two-year journey, Lorelei will be seven when she rings the bell at the UNC Pediatric Hematology Oncology clinic Aug. 13, signaling an end to her treatments for acute lymphoblastic leukemia but also a connection to the friends she’s made along the way.
“I wish ringing the bell meant you really didn’t have to come back,” Lorelei said.
Lorelei said cancer makes her “feel crummy,” but Ware knows her daughter will leave people behind that she’s grown close to, including her Carolina Pediatric Attention Love and Support (CPALS) student, Gracie, and her favorite doctor, UNC Lineberger’s Thomas Alexander, MD, MPH. “She calls him Dr. Alexander Hamilton,” Ware confesses. “Around New Year’s Eve, she cried and said she was going to miss all her cancer friends.”
A whirlwind of emotions
Ware, assistant principal at Wiley Magnet Elementary School in Cary, North Carolina, and her family became part of the cancer community in 2017 when Lorelei was first diagnosed. Ware had noticed some bruises on her daughter but figured it wasn’t unusual for an active preschooler. But a call from another mom changed her mind. “She told me ‘Lorelei doesn’t seem right. She played all day, but all their games were laying-down games. She doesn’t look well,’ ” Ware said.
She figured blood work could help provide some insight into what was going on with her daughter, but after a shocking appointment, they found themselves on their way to the hospital because the doctor suspected leukemia.
“I thought they were going to tell me I didn’t feed her enough broccoli,” Ware said. “We went in, and it was very obvious to the pediatrician. She said go straight to the hospital.”
Despite the crushing news and whirlwind of emotions, Ware, a UNC alumna, felt at home right away with the doctors and staff at the N.C. Cancer Hospital, the clinical arm of UNC Lineberger. “You can imagine the world kind of cracking open,” she said. “You’re getting this horrible diagnosis, but it was such a warm and safe place to get that news. There were lots of emotions — both feeling wrapped in love and feeling a lot of fear.”
Building community and forming connections
Ware said she believes strongly in being open and transparent and immediately decided to share Lorelei’s diagnosis on social media, an action she didn’t realize would have such a far-reaching impact at the time.
“In telling our story online, a friend saw it, and said ‘this sounds a lot like my child.’ They ended up being next to us in-patient,” Ware said. “That affirmed my decision to be very public about things because we helped someone.”
Lorelei, who really wants a guinea pig and loves DC Comics bad girl Harley Quinn and Belle from “Beauty and the Beast,” said she likes helping people and helping her friends. Ware has the same outlook, but wanted to take that goodwill to the next level. They started small — a bandage drive that brought in 50,000 adhesive bandages that were donated to the pediatric oncology clinics, UNC Children’s Hospital and UNC Department of Surgery. A gift basket drive was another success; Ware and Lorelei shared baskets with goodies and inspirational messages with moms and families at the N.C. Cancer Hospital. Then they set their sights a little higher.
Giving back to the clinic
Ware said after speaking with Stuart Gold, MD, head of pediatric oncology hematology, she was interested in doing an online fundraiser. They set a goal of $6,000 in 2018 and met it, then decided to double the goal in 2019. Within three weeks, they raised $12,000.
“I’ve gotten bitten by the fundraising bug, and we have the opportunity to get more creative with it,” Ware said. “I definitely want to continue doing it.” Ware, a runner and fitness enthusiast, said she’d like to do a race to support #TeamLolo at some point in the future.
Ware is a longtime Cary, North Carolina, resident and felt that since the community supported Lorelei and her family — husband John, and other daughters Catesby, 9, and Elle, 3 — during their time of need, she is happy to return the favor.
“I’m wrapped in love,” she said. “I want everyone who has the experience of having a child with pediatric cancer — the whole family — to feel that, and until every family has that experience, we’re going to keep going.”