What life looks like for an 18-year-old with cancer and special needs
It’s a Friday night in February, and CeCe Snyder is all dolled up. She’s getting ready for “Night to Shine,” a prom for people with special needs.
CeCe has Down syndrome. And exactly one year ago, she was diagnosed with acute lymphoblastic leukemia.
Her mom Carla has been reflecting on how much their lives have changed.
Before the diagnosis, the family had been planning a vacation to Minnesota. CeCe was on track to graduate high school. She participated in special needs cheerleading and other sports.
One year later, CeCe has been through multiple chemo treatments, hospital stays, clinic visits, pokes and procedures — and even a long infection scare that had her in a medically induced coma and on kidney dialysis for several weeks.
The new normal has been challenging, but CeCe’s parents have been looking forward to this night for quite a while. The February snowstorm delayed the event, but that wouldn’t stop CeCe — and her boyfriend Nick — from attending two weeks later.
Last year’s Night to Shine was CeCe’s first, before she was sick. Her hair was much longer and she didn’t need a wheelchair. But she doesn’t seem to mind. With a fresh haircut and flower clips in her short hair, she wears a big grin as her mom helps her put on jewelry.
“She never sees the bad in anyone or anything,” Carla says.
You would never guess that the day before, CeCe had been particularly cranky at the Mary Bridge Children’s Hematology/Oncology clinic, where she’s been on and off chemotherapy for the past few months.
One step forward, two steps back
CeCe’s infection last fall interrupted and delayed her chemo treatment, and now she’s progressing slowly, as her body will allow. The infection took a toll — and chemo isn’t known for being easy on the system. Not to mention, CeCe’s Down syndrome makes her especially sensitive to the side effects of chemotherapy.
As of early January, CeCe’s platelet counts were too low to continue chemo, so she was back to regular blood checks and transfusions to help her numbers get back to a normal range.
Then the entire family came down with influenza.
“If it ain’t one thing, it’s another,” says her father, Jeff. “You gotta take it as it comes.”
After the flu passed, CeCe was back to chemo — but only temporarily, as her platelet counts dropped again.
Under the guidance of her oncologist Robert Irwin, MD, CeCe is taking a few weeks off from her regular appointments to regain her strength. Dr. Irwin is confident she’ll be ready to resume by late March.
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The family has appreciated the break and the chance to live a relatively normal life, aside from CeCe’s many medications, including oral chemo pills.
Carla has used up most of her vacation time attending appointments with CeCe and Jeff. Though Jeff is with CeCe nearly 24/7, Carla prefers not to miss appointments. Fortunately, Carla’s coworkers have generously donated vacation time to help — and she says the entire Maple Valley community has helped with donations of food, movie tickets and more.
CeCe’s parents admit they’ve noticed signs that CeCe’s blood counts have dipped again — changes in energy and other physical indicators. They can’t help but worry. But they’ll keep trekking ahead and taking each day as it comes.
It’s what they’ve always done. Dr. Irwin and CeCe’s entire care team at Mary Bridge Children’s are inspired and touched by their strength and love for their daughter.
“Her parents are some of the most dedicated parents that you could ever hope to see,” says Dr. Irwin.
“Jeff and Carla? Saints,” says Katie Shields, RN, CeCe’s nurse navigator at the Mary Bridge Hematology/Oncology clinic. “They’re amazing people, just the love they have for her. They really bend over backwards to help in any way they can. They’re both so strong.”
CeCe’s Night to Shine
In her light pink dress, white tights and special hand-painted sneakers, CeCe’s ready for the drive to New Life Church in Renton for Night to Shine.
CeCe’s boyfriend Nick Hawley and his mom Wendy wait for the family at the entrance. Nick hasn’t seen CeCe in several days since he just flew back from visiting family in California.
From here, they wait in line to check in and connect with their chaperones for the evening.
The event is for parents as much as their children. A special room is set aside for caregivers and parents to have dinner, socialize or relax — complete with a livestream of the dance floor.
Next, CeCe gets the star treatment: makeup, photos and a corsage of her choosing. Nick resists picking a boutineer but eventually gives in. The two then sit down for dinner.
Along the way, CeCe runs into several friends who say hi. She’s a popular face — many classmates and teammates haven’t seen her in months because she’s been away from school and extracurriculars due to her medical needs.
After dinner, Nick and CeCe stop to pose for another photo on their way to the dance floor. Nick takes great care in getting the pose just right. In fact, his sole focus the whole night is CeCe and it’s clear that he cares for her.
Nick and CeCe were born a day apart and met as infants. Like CeCe, Nick has Down syndrome. The two have video calls every night and regularly go to movies and other events together.
“I picked Nick as my future son-in-law since day one,” Carla says.
When the couple hit the dance floor, all the worries about how CeCe would dance melt away. She doesn’t need to get out of her wheelchair to move to the music. Volunteers dance all around them in encouragement.
CeCe is in her element.
“They treat them like royalty,” Carla says. “It is just one of our favorite nights.”
Story by Roxanne Cooke
Photos by Dean Koepfler
Videos by Chris Ceresa
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