How Mary Bridge Children’s helps a family navigate a cancer diagnosis
Cecile Snyder’s cancer journey could have its own soundtrack.
From Adele to Black Sabbath, music has punctuated every visit Cecile (CeCe) and her family have made to Mary Bridge Children’s Hospital & Health Center since she was diagnosed with acute lymphoblastic leukemia in February 2018.
CeCe’s latest chemo treatment was no different.
It’s 10am on a Monday in December, and 18-year-old CeCe is preparing to have her port accessed. She’s not exactly a fan of the process, which involves a needle, but it’s necessary for delivering the chemotherapy medication.
Her mom Carla climbs onto the gurney behind CeCe and her dad Jeff loads her preferred song for getting through port access: “Iron Man” by Black Sabbath. It’s a compilation video featuring Iron Man from the Avengers, one of her favorite series.
It’s a strange but touching scene, heavy metal filling the room as parents and caregivers surround CeCe: Carla holds and comforts her as the nurse accesses the port below CeCe’s collarbone. CeCe is clearly uncomfortable and squirms, but when she hears the first few beats of the song, she immediately focuses on the music video playing on her dad’s phone.
And just like that, it’s done, and CeCe is back to her playful self, holding her stuffed Sasquatch doll (“Squatch”) and joking with her parents and nurse.
CeCe doesn’t fully understand why, in the past year, she’s had to visit clinics and the hospital so much. Though she’s 18 years old, she has Down syndrome, a genetic disorder marked by developmental and intellectual delays.
This chemo treatment is only the second dose of chemo CeCe has received since last August. In September, she developed an infection that hospitalized her for over a month.
A delay in treatment
Last fall, CeCe’s family was preparing for the last dose of an aggressive chemotherapy treatment known as “the red devil.” With her blood counts already low, she received the chemo but was admitted to Mary Bridge Children’s Hospital as a precaution. Five days later, she developed an infection that sent her into septic shock.
CeCe spent 46 days at Mary Bridge Children’s, 30 of which were in the pediatric intensive care unit (PICU). For most of her PICU stay, she was on kidney dialysis.
Because the Snyders live 30 miles away and there wasn't enough space in CeCe's hospital room for sleeping, they stayed a block away at Tree House, a building of apartment suites offered at low or no cost to families of patients receiving care at Mary Bridge Children's.
"There was no room for us to stay in her room in the PICU because the life support equipment took every extra space," Carla wrote in a thank-you letter to Tree House. "To have Tree House be available so we could get a few hours of sleep each night, get something to eat, and be able to do laundry, was a lifesaver for us."
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It was a scary time for the family, with CeCe intubated and in a medically induced coma for most of it. Carla says she was worried they’d have to go home without their daughter.
Fortunately, CeCe got through the infection and was brought out of her coma, then sent home to recover more fully.
“They saved her life, for sure,” says Carla of Mary Bridge Children’s. “All the people here are amazing.”
Since then it’s been a game of wait-and-see, with regular checkups to keep on top of her health and cancer.
Navigating a cancer diagnosis
CeCe lives at home with her parents and an older brother in Maple Valley. Since she was a year old, her father has been a stay-at-home dad while her mom works full time.
Last February, CeCe was diagnosed with leukemia and became a Mary Bridge Children’s patient. She’s been through multiple rounds of chemo and several hospital stays. Until her infection in September, she had been handling the treatment reasonably well.
It’s been hard seeing chemicals pumped into CeCe, says mom Carla. And even harder since her infection and long hospital stay. But she admires CeCe’s strength in the face of it all.
“She’s a trooper,” says Carla. “She’s amazing; she’s a joy. She’s stronger, braver than I could be.”
Though Carla and Jeff are worried about CeCe, they don’t show it. Their partnership appears natural and loving as they navigate countless appointments and discuss CeCe’s needs with her nurses and doctors.
The two are high school sweethearts, married more than 30 years, and have three other adult children and an adopted niece. Cecile, who is known to most everyone as CeCe, is the youngest.
Though she’s 18 years old, Mary Bridge Children’s will still consider CeCe a pediatric patient until she’s 21 because of her Down syndrome.
It’s CeCe’s senior year in high school, but it’s been delayed because of her medical needs. She’s also had to take a break from her school’s special-needs cheer squad, The Sparkle Effect, as well as Special Olympics activities.
Part of the Mary Bridge Children’s family
CeCe, Jeff and Carla are well-known at Mary Bridge Children’s by now. Every clinic visit is full of friendly hellos and conversation.
Kristen Bishop, a Mary Bridge Child Life Specialist, says CeCe and her parents have made the staff part of their family.
“They have a great sense of humor and are so supportive of CeCe and each other,” Bishop says. “They make a great team. Everyone loved them right away.”
CeCe’s oncologist, Robert Irwin, MD, is one of her favorites at the clinic.
“They light each other up,” Carla says. “He comes in and her smile lights up, the room lights up. It’s just a different aura, a different light, and it’s very special.”
The feeling is mutual.
“CeCe is delightful,” Dr. Irwin says. “She loves to laugh, she loves to tell jokes. And once you get a joke going with her, she will continue it and take it to the next level.
“Usually when I leave the room, I’ll say, ‘See you later, alligator.’ She started to respond with ‘After a while, crocodile.’ And then she came up with four or five others.”
One of those other sayings is “Stay calm, Squatch on,” for her constant companion, the stuffed Sasquatch doll.
“Her favorite, I think, is ‘Bye-bye, butterfly,’” Dr. Irwin says. “That’s now her catchphrase.”
“Bye-bye, butterfly” is also what her parents call it when CeCe’s port is de-accessed: a sign that the worst part of that day’s appointment is over, and soon the family will leave their friends at Mary Bridge and go home.
“And then, shoes on and she’s just a beam of light going home,” Carla says.
Treading carefully with chemo
After CeCe’s infection scare this past fall, Mary Bridge Children’s oncologists advised the family that the planned inpatient chemotherapy was now too great a risk for her. Instead, they recommended the maintenance phase of chemotherapy, a less aggressive and outpatient-based chemo — once her blood and infection numbers were in a normal, safe range.
The Mary Bridge Hematology/Oncology clinic has been keeping a close watch on CeCe’s blood counts to determine the best time to restart chemotherapy. They’ve also been working in close coordination with the Mary Bridge Infectious Disease clinic to ensure her infection from September isn’t at risk of returning once she restarts chemo.
Her numbers were looking good in late November and early December, so CeCe received two chemo treatments mid-month.
Unfortunately, CeCe’s body didn’t react well to the new round of chemo. Her platelet counts dropped too low and she became anemic, so chemo had to be stopped once again.
It’s back to monitoring her numbers and giving her blood transfusions to help her along. And her family will keep a close eye on the obvious physical signs.
“We know what the clues are when she’s not doing good and starting to take a dive with the blood counts,” Carla says. “We’re totally in tune with everything that goes on with her.”
Story by Roxanne Cooke
Photos by Dean Koepfler and Russ Carmack
Videos by Chris Ceresa
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