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Willa's Story
Chapter 3
In March 2017, Willa began complaining of neck pain. At first, it seemed to happen only in the mornings. I tried changing her pillow and monitored her closely. I became concerned when the staff at her daycare mentioned that she was also complaining during the day.
I took Willa to the Stollery Children's Hospital. After hours of waiting, she was assessed, and we were reassured that nothing appeared urgent. I was told by the ER doctor that a CAT scan could cause problems later in life for someone as young as Willa. We left without answers.
I took her to a naturopath and chiropractor in hopes to find relief for her discomfort. The chiropractor noted a slight head tilt that would improve after treatment but the pain would always return.
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As the weeks passed, Willa's neck pain continued. We made a second trip to the emergency department, where we were told it could be growing pains or that she could be mimicking her dad and I about the neck pain. Even after I said we do not say or have neck pain, we were advised to try a course of Advil. Once again I was left feeling uncertain and unheard.
By the time of our third emergency visit, I knew something wasn't right. After sharing my concerns with our family physician, she encouraged us to return to the Stollery and provided a letter requesting further investigation. This visit felt different. Blood work was completed, and Willa's results prompted her hospital admission that same evening. An MRI was scheduled for the following day. Although we would later learn that her blood work was not as concerning as initially believed, I have always felt that it was the reason further testing finally happened. Looking back, it felt like a sign that something much bigger needed to be discovered.
The next morning, April 26, 2017, Willa underwent her first sedated MRI. As Mike and I waited for her to return from recovery, a pediatric neurosurgery nurse practitioner entered the room and delivered words that would change our lives forever: our daughter had a brain tumour.
I remember collapsing to my knees crying as Mike tried to hold me up processing the news himself. How could our happy, seemingly healthy little girl have a brain tumour? Nothing could have prepared us for those words.
Shortly afterward, we met with the neurosurgeon, who explained that the tumour was roughly the size of a mandarin orange and located in the back of Willa's brain. We sat in shock as medical teams discussed the complexity of what they were seeing on the MRI. Through tears and fear, we learned that she would need brain surgery immediately. A sample would be sent for pathology, but no one yet knew whether the tumour was cancerous.
Less than forty-eight hours later, I carried my baby girl into the operating room, kissed her face, and sang to her as the anesthesiologist put her to sleep. The surgery lasted eight hours. Due to the tumour's location and complexity, surgeons were only able to safely remove about ten percent.
When Willa woke, she could barely speak. Our once-chatty little girl could only say a few words. She could no longer sit, walk, or eat on her own. The swelling in her brain required immediate steroid treatment, and although we were told she would regain those abilities with time, it was heartbreaking to witness. After four days in PICU and continued recovery on another unit, we held onto the hope that the worst was behind us.
Ten days later, our world shattered again. The pathology results confirmed that Willa had an Anaplastic Ependymoma Grade 3, an aggressive brain cancer located in the posterior fossa of her brain and extending to the top of her spine.
Shortly afterward, Willa underwent a second surgery to place a shunt to relieve pressure caused by excess fluid on her brain. We then met with oncology to discuss treatment options. At just two-and-a-half years old, Willa was younger than the preferred age for radiation therapy, even though it was her best chance. In May 2017, she began twenty-eight treatments of radiation at the Cross Cancer Institute.
Because she was so young, Willa required anesthesia for every treatment. Each day, she was secured beneath a custom-made mask while I waited outside the treatment room, unable to be with her during the radiation itself. Despite everything she endured, Willa fought her way back. During our seven-week hospital stay, she gradually regained her speech, learned to eat again, and eventually walked on her own.
After the first week of radiation treatment, Willa was well enough to leave the hospital and return home. From that point on, we traveled daily to the Cross Cancer Institute for her treatments. While the routine was exhausting, being back in our own home and surrounded by familiar comforts was a welcome change after weeks spent in the hospital.
The steroids caused her to gain weight and gave her the sweetest, roundest cheeks, they were a small price to pay for her recovery. Six weeks before her third birthday, Willa completed all twenty-eight radiation treatments—a milestone that felt impossible only months before.
We celebrated Willa's third birthday in style with a huge Paw patrol-themed party in the park surrounded by family. We weren't just celebrating her birthday—we were also celebrating the completion of her cancer treatment that occurred a few weeks earlier.