At nine, Nyah was already a brilliant soccer player. Steadily working her way up to the top teams for her age group, soccer was all she imagined for her future.
Nyah loved school and always prided herself on not missing school, so when she experienced a nosebleed before school one morning, she didn’t let that stop her. Later that day, while running in PE class, she experienced excruciating stomach pain, but she soldiered on. That was until her teacher noticed and asked her to stop. That day, she was sent home early and spent her afternoon in bed. Her pain got worse. It hurt even to stand up straight and after a few hours her family knew she should be taken to the hospital. Nyah never imagined she would end up at the hospital that night. As the night wore on and more tests were run, it became evident that it was more than just a gastrointestinal infection which they initially thought it to be.
At about 11 PM that night an oncologist walked into her room and said the words she was never prepared to hear “Acute lymphoblastic leukemia”! Nyah had just turned 10 and was in for the fight of her life. The fall of 2017 her life turned upside down!
Nyah was old enough to understand what was going on and what her treatment options were. She was admitted the next day for a central line, so they could start her on chemotherapy right away. A central line is a large IV inserted under the skin of your chest where nurses can administer medications. She was put on a 2.5-year treatment protocol with different cycles and different types of chemotherapy. Some cycles were easier and some harder. Despite her ongoing treatment, Nyah stayed active. She continued with soccer and speed skating as much as she could . As the treatment progressed it became harder and harder to keep up with her peers since the chemo was draining to her body.
Another part of her treatment was lumbar punctures and bone marrow aspirations. The bone marrow test was done to see if she was in remission, but unfortunately, she wasn’t. Nyah had to go in for an extra cycle of chemo to finally get into remission. She had many side-effects from the treatment – a drop in her blood levels, extremely brittle, and others. It was in January 2020 that the doctors removed her central line.
However, Nyah’s treatment-free life was short-lived as she relapsed later that year in September 2020. After more chemo sessions, she relapsed again. It was concluded that the only treatment that might work for Nyah was Bone Marrow Transplant (BMT). During a BMT doctors administer high doses of chemo to destroy the child’s cancer cells. The problem is that it also wipes out all the healthy cells and the child’s immune system. This leaves the child vulnerable to infection and Nyah was no exception. On May 13, 2021, she got her bone marrow transplant and was deemed cancer-free!
It wasn’t long before she developed graft-versus-host-disease (GvHD) — a complex side effect of transplantation in which the donor cells attack the host’s body. For Nyah, it was the muscles of her ribcage that were under attack, restricting the expansion of her ribcage and capacity to breathe. No wonder she was always tired, sleeping 12 to 13 hours at a time and still exhausted.
Fortunately, with YOUR support, Kids Cancer Care was with Nyah every step of the way. Throughout her treatment, she has been involved in our PEER exercise program. This program has helped Nyah stay active. She would do PEER sessions online through Zoom, sometimes from home and sometimes from the hospital. Our one-to-one PEER sessions with our PhD exercise specialist helped Nyah strengthen her cardiovascular capacity to improve her breathing.
Nyah has also attended Camp Kindle. “Camp gave me space to simply be a kid and forget about any treatment worries while knowing I had nurses nearby and all my medication with me. My favourite memory was when my group and other campers gathered around the campfire and chatted after the dance on the final day.”
Kids affected by cancer miss out on a lot. Sometimes there are developmental or skills gaps because they have been so isolated and have missed so much school, sports, and extracurricular activities. Our Teen Leadership Program helps address these gaps. In grade 10, Nyah joined our Teen Leadership Program (TLP). “TLP has given me a community I love,” says Nyah. “It not only teaches us practical life skills like leadership or sales, but many of the workshops prepare us for the future.”
While Nyah is looking to the future, her medical journey is far from over. When conventional GvHD medications failed, Nyah faced the only treatment remaining — extracorporeal photopheresis (ECP). During ECP, a specialized machine separates the patient’s white blood cells from the rest of the blood and treats them with a UVA light. This stops the white blood cells from attacking the host when returned to the body.
While it’s still too early to say whether ECP is working for Nyah, and she has let go of her soccer dreams, the 16-year-old girl remains steadfast and upbeat. “As bad as cancer is, it’s given me so much. I even know what I want to do for my career now — pediatric oncology. I want everyone to know just how impactful this organization has been for me.”
Thank you for making our programs possible for youth like Nyah. You’re giving them a community and a purpose.
