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Willa's Story
Chapter 9
In September 2023, Willa had an MRI that showed a new area of concern. It was not malignant, but it was different and located on the right side of her brain, separate from her original tumour. Mike and I met with her neurosurgeon, hoping for answers. While he was not overly concerned about this new spot, he shared something much harder to hear. Compared to scans from previous years, Willa's brain showed signs of shrinking, likely because of the radiation treatment that had helped save her life years earlier.
We knew the appointment would be difficult, but we left feeling heartbroken and helpless. Once again, there was no treatment, no plan to make things better, and no way to stop what was happening. All we could do was continue loving and supporting our girl the best we could.
As always, we focused on what brought Willa joy. We spent time together as a family, made memories whenever we could, and continued getting out into the community. But we could see things changing. Willa was becoming increasingly tired and spent much of her day sleeping. We stopped worrying about schedules and expectations and simply followed her lead, letting her decide what each day would look like.
As her needs increased, everyday tasks became more challenging. Getting Willa in and out of the van and transferring her safely was becoming increasingly difficult, and we began exploring options to keep her comfortable and enable her to continue participating in the activities outside of our home, as well as medical appointments. We learned firsthand how difficult it could be for families caring for a child with complex medical needs to access equipment that would make daily life safer and more manageable.
One of Willa's greatest joys had always been water. Before her diagnosis and the physical challenges that followed, she had been a little fish, happiest in a pool or bathtub. We had been working with her rehabilitation team toward getting her back into a pool, something we knew she would have loved. There were many moving pieces to make it happen, and unfortunately, time ran out before we had the chance.
Bath time remained one of Willa's favourite parts of the day. Mike and I had always managed her transfers ourselves, but as she grew and became more fragile, we began looking into equipment that would allow me and her nursing team to care for her more safely and comfortably. We were making plans and exploring options, believing we had more time ahead of us. Looking back now, we didn't realize how quickly the next few months would change everything.
At the end of March, Willa began showing signs that she wasn't well. Her oxygen levels were dropping, her heart rate was elevated, and she seemed increasingly unwell. With the support of her nurses and home care team, we did everything we could to manage her symptoms at home. Eventually, her doctor advised us to call an ambulance and bring her to the hospital.
Once again, we spent nearly an entire day in triage before finally being admitted to a room. Despite all the signs that Willa was sick, every test continued to come back negative. There seemed to be no clear explanation for what was happening.
Looking back now, I can't help but wonder if this was Willa's way of telling us that something wasn't right.
Before she was discharged, I asked for an MRI. The results of that scan would change everything.
Her doctor sat down beside me in her hospital room and gently explained what they were seeing. While a diagnosis could not be confirmed without further testing, there was widespread disease throughout the right side of Willa's brain. The findings were highly concerning for a rare and aggressive form of brain cancer involving the lining of the brain. It was not operable. There were no treatment options. And the prognosis suggested that Willa had very little time left.
In that moment, it felt as though the world stopped.
All I could do was sit beside her hospital bed, hold her hand, stroke her face, and cry. Willa lay there peacefully, unaware that our hearts had just been shattered all over again. By then it was evening, and all I wanted was to take my little girl home. I called Mike and told him to come to the hospital. I couldn't bring myself to tell him the news over the phone. He and Weston came right away.
Together, Mike and I had to face the hardest conversation of our lives—a conversation no parent should ever have to have.
Because Willa relied on a ventilator to breathe, it was considered life support. I had never thought of it that way. To us, it was simply part of Willa's life. It was one of the many things we had learned to adapt to over the years, just another piece of caring for our daughter.
Over the next few days, we met with Willa's doctors, the palliative care team, and our home care team. They explained that if we chose, Willa could be at home, surrounded by the people who loved her most. We could remove the ventilator in the comfort of her own home and allow her to pass peacefully, with her medical team there to support us.
We were told that we could choose the day.
How do you choose a date to say goodbye to your child forever?
It was a decision that broke our hearts. One we never imagined having to make. But we also knew that Willa had endured more than most people do in a lifetime. Her little body was tired. We never wanted her to suffer. As impossible as it felt, we knew one thing with certainty: when the time came, we wanted Willa to be at home. Not in a hospital room. Home, where she was happiest, surrounded by the people who loved her beyond measure.
The weeks leading up to that day were filled with an overwhelming amount of love and support. We opened our home and our hearts to the people who loved Willa most, giving them the opportunity to spend time with her, share memories, and say goodbye in their own way. Every visit was a reminder of the impact our little girl had made on so many lives.
During those weeks, we celebrated her brother Weston's sixth birthday. Trying to explain to a little boy that the big sister he adored was going to heaven was one of the hardest things we have ever done. We spoke to him in a way his young heart could understand, even though the full meaning would take much longer to grasp.
Thanks to Willa's incredible rehabilitation team, we were able to give her experiences we will treasure forever. They arranged for a portable hot tub to be set up in our backyard so Willa could be back in the water she loved so much. I can still picture the peace on her face as she settled into the warm water, comfortable and content.
We were also able to take her on one final bike ride in an adaptive bicycle built just for her, feeling the fresh air and the wind in her hair.
These moments became some of our greatest gifts.
On April 28, 2024, in the comfort of her own room, our beautiful, brave, and incredibly strong little girl took her last breath. Mike and I held her in our arms, just as we had the day she entered this world nine years earlier. We told her how much we loved her, how proud we were of her, and that she could finally be free. I thanked her for choosing me to be her mama, and Mike reminded her that she would always be Daddy's little girl.
It was peaceful. It was beautiful. And it was the most heartbreaking moment of our lives.
For nine years, Willa showed us what true courage, resilience, and unconditional love look like. She faced every challenge with a strength far beyond her years and touched more lives than she could have ever imagined.
While brain cancer became part of her story, it never defined who she was.
Willa was joy.
She was determination.
She was love.
She was, and always will be, our greatest gift.
Today, Willa's legacy lives on through the WillaSTRONG Foundation. Everything we do is rooted in the love she gave so freely and the lessons she taught us throughout her extraordinary life. Through this foundation, we hope to bring comfort, support, and hope to other families walking difficult paths, ensuring that Willa's light continues to shine in the lives of others.
Willa now dances in the sky, forever nine, forever loved, and forever WillaSTRONG.