Bye bye, butterfly
What happens next in CeCe’s journey?
After a few weeks away from the Mary Bridge Hematology/Oncology clinic, CeCe Snyder is now getting back on track with her chemotherapy.
She’s in particularly good spirits at a checkup in March.
Sporting a bedazzled jean jacket and a Shazam lightning bolt T-shirt, CeCe is all jokes and silliness during this appointment. April Fools’ Day is a few days away, so she can’t resist the opportunity to prank her nurse.
“What’s that?” she asks, pointing behind the nurse at an empty wall. Then, when the nurse turns her head: “Gotcha!”
CeCe brings smiles, as always, wherever she goes. She’s at the clinic to have her platelet and other blood numbers tested to see how she’s reacting to last week’s chemo.
In an exam room across the hall from CeCe and her father Jeff, another child cries — not an uncommon occurrence in a pediatric cancer clinic.
“It’s hard what we ask children and adolescents to do,” says Robert Irwin, MD, CeCe’s oncologist. “They not only have to do difficult things with taking medicines that make them feel bad; they also miss out, and they are unable to do some of the normal, healthy things that they should.”
CeCe’s case has been tough for other reasons, too — she has Down syndrome and can’t fully comprehend why she’s at the doctor’s office and hospital so much.
‘The extra chromosome is an enhancement’
How do you explain to a child with Down syndrome that she has cancer?
That was the challenge Carla and Jeff Snyder faced last year, when CeCe was diagnosed with acute lymphoblastic leukemia.
But the Snyders are nothing if not creative. They used CeCe’s favorite superheroes — the Avengers — to tell a story.
“With her level of understanding, we explained that in her bones, in her marrow, in her blood is these bad guys,” Carla says. “And they are multiplying so fast, they’re pushing out all the good guys. So every med, every chemo, everything she takes is an Avenger.”
“All the chemos and things that are getting done to her, we related them to Iron Man, the Hulk, Thor; they’re all coming in to help her,” Jeff adds.
It helped at the beginning, and it still helps today, they say.
“That, and she thinks Tony Stark and Captain America are pretty handsome — Thor too,” Jeff jokes.
Relating CeCe’s treatment to superheroes helps — so does routine.
“We get a little fight back mainly when it’s a new thing,” Carla says. “But she knows routine.”
But it’s not all challenging. CeCe’s positive attitude and friendliness is contagious. She usually bounces back quickly. She’s able to joke and kid around even during appointments where she’s also crying and upset.
“She’s open and friendly to everybody,” Carla says. “We are so lucky to have her. The extra chromosome is an enhancement.”
CeCe’s special relationship with Dr. Irwin and other providers and staff at Mary Bridge has made the family’s whole experience a little brighter, too.
“They’re kind, they’re supportive, they talk us through everything to make sure we understand,” Carla says. “They’re not just being kind because that’s their job, you can see they’re kind because that’s who they are. They care.”
‘An enormous undertaking’
Sitting through multiple clinic appointments with CeCe and her parents, you get a sense of the complexity of a leukemia diagnosis. Jeff carries a large tackle box to every appointment. Inside are CeCe’s medications, paperwork and the tokens and beads she receives from the clinic as a reward for each appointment, procedure and test.
When going through CeCe’s list of medications, it’s amazing her parents can keep track of it all. Not to mention the number of staff and providers who stop by during any given appointment. But Jeff and Carla know everyone’s name.
“Patients with leukemia can take over 2,000 doses of oral chemotherapy during the course of care, and this is just an enormous undertaking,” Dr. Irwin says.
Jeff and Carla make it look easy.
“They absolutely adore their daughter and are willing to give her all the love and support, but on the other side, they are also willing to tell her ‘No’ and work hard to figure out ways to help her take her medicine, even when she doesn’t want to,” he says.
The Snyders say they didn’t hesitate to choose Mary Bridge when it was time. They remember being there before, when CeCe was just a baby.
“We would choose it 100 times,” Carla says. “Mary Bridge, it’s in our heart.”
Dr. Irwin shares their affection.
“It’s been just wonderful being able to help CeCe and her family through the leukemia,” says Dr. Irwin. “I’m really honored to be able to do that kind of work. It’s also been really, really challenging. CeCe has had times when she has been very, very sick.
“Fortunately, she has just shown tremendous resilience, and as an oncologist, it’s so gratifying to see a child go through the tough times and then just rebound even stronger.”
CeCe will likely continue her chemotherapy for another year or two.
CeCe’s care team
Countless physicians, nurses, Child Life specialists and other staff at Mary Bridge help care for CeCe. Here are a few of her primary caregivers:
- Robert Irwin, MD, Pediatric Oncologist
- Kristen Bishop, Child Life
- Katie Shields, RN, Nurse Navigator
- Jamie Mihulka, RN, Clinic Nurse
- Allison Langs-Barlow, MD, Infectious Disease Physician
- Harmony Scarlet, Pharmacist
Something to look forward to
CeCe and her boyfriend, Nick Hawley, celebrated their 19th birthdays together at a shared birthday party with their friends, teammates and family.
The morning began with nausea for CeCe — likely from her dose of oral chemo pills the night before — so she and her family are late. When they arrive CeCe looks relaxed and happy, interacting with friends and thanking them for their birthday wishes.
CeCe and Nick were born a day apart and have known each other nearly their entire lives. Their families are close.
The two share a love for pop culture, and the party decorations and cakes reflect their respective favorite characters: Bumblebee from Transformers for Nick and Groot from Guardians of the Galaxy for CeCe.
After the birthday party, it’s important for CeCe to have something else to look forward to, so the countdown for CeCe’s Make-A-Wish trip to Walt Disney World begins.
The family is looking forward to the vacation. Giving CeCe little things to look forward to — like McDonald’s after a clinic appointment — helps, but big plans like Night to Shine and Disney World are something else.
“We’ll chill, and be so far away from everything that’s happened here, in a whole new environment that we’ve never seen,” Carla says. “It’ll be good.”
To be continued
Though CeCe’s cancer treatment is far from over, recovering from last fall’s infection and getting back on a relatively predictable chemotherapy schedule is a huge milestone.
In the meantime, they’ll continue using the Avengers to explain clinic visits and, sticking to a routine CeCe can find comfort in, and giving her rewards and events to look forward to along the way.
“She knows it’s not going to be forever — that one day, all the chemo will stop, all the clinic visits will stop, then we’ll be done,” Carla says.
Still, it’s a challenge. Just recently, CeCe was complaining that her ribs hurt.
“She told me, ‘Enough. No more.’” Carla says.
Carla and Jeff look forward to the day when chemo is over, but admit they’ll miss their Mary Bridge Children’s family.
“You just fall in love with all of them,” she says. “Once we’re done, we never have to go back, we’ll miss them.
“They will forever be embedded in my soul,” she adds. “I can never thank them enough.”
Videos by Chris Ceresa