Two days after Christmas in 2019, 13-year-old Saqora from Oneida, began having extreme pain in her side and under her arms. She felt unusually tired. Not long after telling her mom how she felt, Saqora fell without warning and was rushed to the emergency room at HSHS St. Vincent Hospital in Green Bay.
“I thought we were dealing with her appendix or gall bladder or something like that, so I wasn’t prepared at all for the news we got,” says Saqora’s mom, Marsha.
Blood tests at HSHS St. Vincent Children’s Hospital confirmed Saqora had pre B-cell acute lymphoblastic leukemia (ALL), the most common form of childhood cancer that affects the blood and bone marrow.
“I remember that day so well,” says Marsha. “Saqora looked right at me and said, ‘Mom, I’m going to fight this as hard as I can. Don’t worry, I’m going to fight.’ As comforting as that was, I also felt like I needed to beg God to not take my daughter.”
Less than 24 hours after the diagnosis, a port was placed in Saqora’s chest and she received her first dose of chemotherapy. Chemo at age 13.
“She’s such a good kid, such a brave kid and a smart girl,” says Marsha with a lump in her throat. “She never once gave up. She was so headstrong through all of this.”
After 18 days in the hospital, Saqora returned to the comfort of home, but with an unsettling anxiousness about the months of chemo treatments that lie ahead.
Several weeks later Saqora, in a panic, told her mom through a series of head nods that she couldn’t speak. The words were there, but she couldn’t vocalize them. It was a second rush to the hospital.
“I lost it when she went to the MRI,” says Marsha.
Results showed the development of neurotoxicity, a familiar side effect of medications helping treat her ALL, and she was once again admitted into the hospital. Saqora also suffered from mucositis, an inflammation of the mouth and throat, more than once, and battled through COVID-19. Her doctors say these conditions are not uncommon for patients with a weakened immune system.
Through it all, Saqora tenaciously fought while Marsha continued to be at her bedside day in and day out; other family members waited anxiously at home for updates.
“It’s very overwhelming,” Marsha shared. “If there’s anything I can do to help other parents going through this, it’s a recommendation that they keep a notebook and write everything down. It becomes your bible because you can’t remember everything even though you learn all the medical terminology and you start paying attention to things you never even understood.”
For more than six months – 186 days – the hospital was home, and staff was family. To pass the time, Marsha and her daughter travelled in their minds to a beach, with the sun on their faces. Saqora imagined floating in the ocean where the waves would carry her away and she’d swim back to shore just to float away again.
Saqora imagined what life would be like outside the hospital once she was feeling better and back in school. She told her mom one of the first things she wanted to do was make a real visit to the ocean.
In 2022 Saqora’s wish came true.
She was out of the hospital, had transitioned to taking a chemo pill instead of receiving the medication via IV, and had her port removed. She was in what doctors call the “management phase” of cancer.
To celebrate, her family rented a van and drove to North Carolina where Saqora, on April 23, stood on a giant rock overlooking the ocean and took her final chemo pill.
“She reclaimed her life that day,” says Marsha with tears. “It’s still hard for me to talk about because it was like watching her being born again and getting her life back. She just had this glow, and I don’t know how else to explain it. And ever since that last chemo pill she just keeps shining more and more.”
Her mom snapped a picture of Saqora on the rock that day and says there’s so much meaning behind that photo no one will ever fully understand.
Today, Saqora is back in school. She will be starting the classroom phase of driver’s ed – a rite of passage so to speak for Saqora who turned 16 on October 25.
Her cancer is in remission. Each day she is closer to being cured, which in the medical field means five years cancer-free.
After a long sigh of relief, Marsha says there are too many people to thank for bringing that glow back to her daughter’s life.
“They are definitely good at what they do at HSHS St. Vincent Children’s Hospital and I’m forever thankful to them. They never gave up on my daughter. They never gave up on me. They were always there to answer questions, and it wasn’t just them trying to figure it out. They put her information into a data system that matched all these other hospitals in other countries treating patients with Saqora’s cancer. Not only was she getting personal attention from five doctors right here close to home, but she was getting attention from doctors across the nation who consulted on her case.
“I just also want to express that it’s not just the doctors and nurses. It’s every part of that hospital, every department – the ladies who checked us in, the people at the door doing COVID screenings, the people who clean the rooms – everyone was amazing. I’m so thankful we were able to have all her care locally. The hospital was home just 23 miles from home.”
The journey Saqora began when diagnosed with cancer in 2019, and the hurdles she continues to successfully overcome as she regains her strength, have influenced her outlook on the future. Not only does she envision being a cancer survivor long-term, Saqora wants to help cure others from disease and pain by becoming a surgeon.
“If she can overcome cancer and everything else she’s experienced at such a young age, there’s no doubt she can do whatever she wants in life,” says Marsha. “Just go for it, Warrior.”