This year, Mya Culley lists a Polaroid camera on the top of her wish list. She giggles when asked what she wants most because, after all, she’s 8 years old and excited about the holiday.
Capturing moments is a fun way to freeze time, like the photo snapped when Mya was asked to be this year’s Tree of Hope lighter. She’s sitting on a big colorful couch in the pediatrics department at Roswell Park Comprehensive Cancer Center, with the nurses behind her decked out in Santa and snowman glasses, crouched around without her knowing they were there for the big moment.
“Mya is the joy of Christmas,” says Meghan Higman, MD, PhD, a pediatric oncologist who has been working with Mya and her mom, Tanya Culley, since late August 2021. By the time they met, the little girl had been feeling not quite right for a few weeks, with a fever that wouldn’t break and tests that were initially inconclusive.
“She had a basic MRI for something completely unrelated and she developed a fever that night, at which point I thought maybe it was a side effect from the dye they used,” Tanya Culley says. Mya was tested for COVID several times and visited her pediatrician but told, at the time, that she had a virus that just needed to run its course. Another trip to the pediatrician found an ear infection but even after a week’s course of antibiotics, the fever wasn’t going away. Her pediatrician suggested it was time to go to the emergency room.
“We got some really abnormal bloodwork but they weren’t sure it was leukemia because it doesn’t always show up in the same way,” Tanya says. “After a week in the hospital, we finally got the diagnosis, pre-B cell acute lymphoblastic leukemia. We were told if you have to have a diagnosis, this is what you want.”
“It was right before my birthday,” Mya says. “I stayed in the hospital forever!”
It was more like a month, but in kid-time, that’s about the same thing. Luckily, she responded well to treatment and was able to go home a little faster than the 30 days the doctors anticipated. “It was a lot of treatment but she’s rocked it out,” Tanya says.
Tree of Hope 2022
Register today to join us in our seasonal celebration as Mya lights up the night sky, in Roswell Park's annual tradition of offering hope for all those touched by cancer.
A supportive family makes all the difference
It helps that Mya and Tanya had a lot of support throughout the course of treatment. “You can’t do pediatric oncology without a family,” Dr. Higman says. “We joke about taking a village to raise a child, you really can’t go through treatment without a family. Parents have to make sure their child is taking their medicine on time, making sure they can come in if they have a fever. Mya had that a few times where she had to come back in and stay for a few days. Mom has done a fantastic job. They all worked so well together – her boyfriend and Mya’s grandmother were involved as well – having the ability to have two people hear what’s going on during appointments is important and that’s played out very well for Mya’s family.”
During her treatment, Mya cut off her dolls’ hair when she lost her own “Shirley Temple curls,” Tanya says. It’s growing back but will likely be different. “It’s obnoxious right now!” Mya giggles about the long-term effect of the chemotherapy she still receives in rounds of 21-day treatments. She’s also on five-day courses of steroids that make her very tired.
“I’ll be asleep the whole day,” Mya says. “That’s what you’d do if you could,” Tanya says.
For now, she’s doing well. A nurse will come to her school two days per week when she’s in her treatment cycle, taking blood samples one day and providing chemotherapy another. This way, she can continue to be a kid, learning how to play softball and going about her childhood in as normal a manner a possible, Dr. Higman says.
Be a part of our Wreath of Hope contest!
Create a wreath with your family and friends for a chance to win an iPad Pro! Your work-of-art can be anything from a paper plate drawing to a traditional evergreen wreath decorated with meaningful items
A holiday surprise
A few weeks ago, Tanya picked Mya up from school unexpectedly. There was an appointment at Roswell Park they needed to go to, but everything was fine, Tanya says. When they arrived, there were a few people standing by with cameras, just taking pictures and getting video for future use, they said.
“So, we sat down in the waiting room and what happened,” Tanya prompts.
“My friend brought me a red box. It had a lot of Christmas stuff! There were fluffy socks,” Mya recalls.
In the box was a note. It read “You light up every room you enter with your caring and joyful ways. Will you light up the Roswell Park 2022 Tree of Hope?”
Tanya knew a few weeks prior that this big day was coming.
“She’s just super,” Dr. Higman says. “We were talking about our kiddos and who would be a good tree lighter and she came right to mind. Mya is a dynamic little kid with an infectious smile. She’s at that age where she’s so happy about Christmas and everything is magical.”
Mya will have a special guest cheering her on when she lights up the Tree of Hope on December 9: Her uncle is visiting from Texas, a trip that was originally supposed to happen in August 2021, right around the time she was diagnosed.
It’s just one more reason to celebrate for Mya and her family this holiday season.
Editor’s Note: Cancer patient outcomes and experiences may vary, even for those with the same type of cancer. An individual patient’s story should not be used as a prediction of how another patient will respond to treatment. Roswell Park is transparent about the survival rates of our patients as compared to national standards, and provides this information, when available, within the cancer type sections of this website.
