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Willa's Story
Chapter 5
Willa started preschool this year and absolutely loved it. She was learning to write her name, adored her teachers, and quickly made new friends. No matter what she was facing, Willa remained incredibly social, happy, and full of life.
Between hospital appointments, MRIs, and physiotherapy at the Glenrose, she continued to be a normal little girl who simply wanted to play, learn, and make people smile.
Since her first brain surgery, Willa's right leg had never been quite as strong as her left. She walked with a slight limp, but she never allowed it to define her. She could still run, play, dance, and keep up with everyone else—she just did things at her own pace.
The tumour remained stable, and although she continued her chemotherapy regimen of three weeks on and one week off, we were fortunate not to have as many hospital admissions for low blood counts. Life settled into a rhythm of MRI scans every three months and chemotherapy cycles in between. We planned our lives around scan dates, clinic appointments, and treatment schedules.
During this time, Mike and I secretly planned a surprise trip to Disney World. Thanks to the incredible generosity of family, friends, and supporters who had contributed to a GoFundMe at the beginning of Willa's journey, we were able to make the trip possible. We told Willa just two days before we left, and her excitement was impossible to contain.
The trip was everything we hoped it would be and more. It gave our family a chance to step away from hospitals, treatments, and fear, if only for a little while. We were nervous about travelling while Willa was still actively receiving treatment. No travel insurance company would cover her because of her diagnosis, but with the support of her medical team, we carefully planned the trip around her chemotherapy schedule so she would feel her best.
Looking back now, I am so grateful we took that chance. It would be the last family vacation we would ever take with Willa. The memories from that trip are among our most treasured.
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Disney World 2019
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When we returned home in February, Willa's blood counts dropped again and we were admitted to hospital around the same time as one of her routine MRI scans. That was when the nightmare began all over again.
The scan revealed a small tumour at the bottom of her spine in the nerve roots. It was called a dropped metastasis. Just weeks earlier, Willa had been complaining of leg pain, and suddenly it all made sense.
The tumour needed to be removed and sent for pathology. We were told that cancer cells from her original brain tumour had spread through her cerebrospinal fluid and settled in her spine. Left untreated, it would continue to grow, causing pain and significant complications.
On March 6, 2019, Willa underwent spinal surgery. Thankfully, the surgery was successful. Despite being required to lie completely flat for five days afterward, she remained her funny, brave, and resilient self. She made nurses laugh, charmed everyone around her, and somehow found ways to smile through circumstances that would challenge most adults.
Once she was able to stand and walk again, we were finally able to bring her home. During that admission, we met with oncology once again to discuss what came next. The pathology results confirmed our fears. The tumour was a highly active Anaplastic Ependymoma.
We were told that because the cancer had spread to her spine, there was a strong likelihood that microscopic cancer cells were already circulating throughout her cerebrospinal fluid. To try to stop further spread, doctors recommended radiation to her entire brain and spine.
Mike and I were devastated. How could we put our little girl through radiation again?
At the same time, we were told that without treatment, the cancer would continue to spread. The consequences could be severe, painful, and potentially happen quickly. We couldn't bear the thought of Willa suffering. Nothing about the decision felt fair. Her medical team recommended another brain surgery to remove as much of the original tumour as possible, believing it was the source of the recurrence. This recommendation left us terrified.
Willa had already endured so much from her first surgery, and we remembered how dramatically it had affected her ability to walk, talk, and function afterwards. For weeks, we felt trapped between impossible choices. Every option carried risks, and every outcome was uncertain.
We sought opinions from specialists at St. Jude Children's Research Hospital in the United States, who had extensive experience treating this type of tumour. Plans were made for Willa to receive Proton Radiation Therapy following surgery, a more targeted form of radiation than the photon therapy available in Canada. After countless meetings, discussions, tears, and sleepless nights, we were told that although the surgery was significant, it offered Willa the best chance at both survival and quality of life. So we made the decision.
March 19, 2019. The date that will forever be etched into my memory.
That morning, I walked my baby girl into the operating room. I truly believed I would see the same little girl when the surgery was over.
Willa was so brave. As I held her close with her blanket wrapped around her fingers and Baby Bunny tucked beside her, she looked at me and asked, "Mama, is he going to hurt me?" She was talking about the surgeon.
Holding back my own fear, I told her, "He's going to fix that owie in your head, baby. You're going to be okay." I kissed her face, held her hand, and sang to her as she drifted off to sleep. Those were the last words I would ever hear my little girl speak.
After an eleven-hour brain surgery, the surgeons achieved what they had hoped for - Willa was cancer free. The entire tumour had been removed, but the cost was devastating.
The tumour had been wrapped around critical structures deep within her brain. To remove it, six cranial nerves on the left side had to be sacrificed. During surgery, Willa also suffered a stroke in her cerebellum. The damage was life-altering. She lost hearing in her left ear. Her left eye could no longer blink or move properly. The muscles responsible for chewing and swallowing on the left side of her face no longer worked. She was left with facial paralysis and could no longer protect her airway.
We were told she would need a tracheostomy to help her breathe safely and manage her secretions. And because of that tracheostomy, her voice was gone. The little girl who never stopped talking could no longer speak.
Late that night, we were finally allowed to see her. Nothing could have prepared us - our beautiful little girl was surrounded by machines, monitors, tubes, drains, and medications. Her tiny body looked almost swallowed by the equipment keeping her alive. Mike and I were completely shattered.
The following morning, Willa opened her eyes, but the bright-eyed little girl who had walked into surgery was gone. Everything had changed.
We never left her side. For seven straight days, one of us was always there, sleeping in chairs, holding her hand, talking to her, and willing her to keep fighting. We were only able to do that because our incredible family stepped in to care for her little brother at home.
What followed were eighty days in the Pediatric Intensive Care Unit. Due to the severity of her condition and complex medical needs, Willa was no longer considered safe to travel to the United States for Proton Radiation Therapy. Instead, she would undergo radiation once again at the Cross Cancer Institute.
Twenty-eight more rounds.
Twenty-eight more days of watching our little girl endure treatment she never should have needed.
She lost her hair again. About three-quarters of the way through radiation, we nearly lost her to sepsis. Next to the day of her surgery, that was the most terrifying day of my life. Yet somehow, Willa kept fighting. Day after day, she pushed forward.
She was unable to walk and relied on a wheelchair. The stroke had left the right side of her body profoundly weak. Tasks that had once been effortless now required tremendous concentration and determination, but Willa never stopped trying.
She worked through rehabilitation in the hospital every single day. Slowly, she learned new ways to communicate. Thankfully, her dominant left hand remained strong enough for thumbs up, thumbs down, pointing, and simple gestures. We also developed yes-and-no systems using eye gaze and visual cues. Little by little, she found her voice again without words.
Then she began trials off the ventilator. Every milestone felt impossible until she achieved it. Again and again, she exceeded expectations. Her medical team was amazed by her progress. After everything that surgery had taken from her, Willa continued to prove everyone wrong. Beneath the paralysis, the tracheostomy, the wheelchair, and the countless setbacks was still the same fiery, determined little girl we knew and loved. She refused to give up.
In total, we lived at the hospital for eight months. Family visited whenever they could, but the person who brought Willa the most joy was her little brother. Every visit from him lit up her face and reminded us that there was still so much worth fighting for. I stayed at the hospital day and night. Mike would take over on weekends so I could briefly step away, regroup, and spend time with our son.
Eventually, after months of rehabilitation, medical setbacks, and small victories, discussions finally began about bringing Willa home. But getting her home would require far more than simply being discharged.
By this point, Willa's care needs were incredibly complex. She depended on a tracheostomy, specialized equipment, medications, feeding support, and constant monitoring.
Before we could leave the hospital, Mike and I would need to undergo extensive medical training. We learned how to suction her airway, change tracheostomy tubes, respond to emergencies, operate medical equipment, administer medications, and manage every aspect of her daily care.
The training was intense. We were no longer just Mom and Dad. We were becoming nurses, respiratory therapists, caregivers, and advocates all at once.
As overwhelming as this was, we would do whatever it took to bring our little girl home.