Willa's Story

As the months passed, Willa was finally able to come off steroids and slowly began losing the weight her little body had gained during treatment. Three months after radiation, an MRI brought incredible news: her tumour had shrunk by nearly 50 percent. We were overjoyed, and her neurosurgery team was thrilled with how well the radiation had worked.

With no immediate decisions to make, we chose to focus on making memories. Willa was granted a wish through the Make-A-Wish Foundation. Her wish was simple: she wanted to see "the Castle." It is what she always called Disneyland. After everything she had endured over the previous six months, it was the perfect opportunity to simply be a child again. We had the most magical trip, joined by several family members, and even visited the San Diego Zoo so she could see her favourite animal—koalas. The memories we made on that trip will stay with us forever.

Back home, discussions continued with Willa's medical team. Further surgery was not recommended, as she had already endured so much and was doing remarkably well. Instead, we were offered an oral chemotherapy trial. While her type of tumour typically does not respond well to chemotherapy, some studies suggested it could help slow or prevent future growth. Wanting to do everything possible to keep the tumour stable, we decided to move forward.

The medication was given at home, which proved challenging at first. We became creative, mixing it with fruit concentrates and introducing a treasure box filled with small prizes as a reward after each dose. Although it was considered low-dose chemotherapy, it was still toxic enough that Mike and I had to wear medical gloves when administering it.

The treatment also meant frequent blood work. Willa's IVAD made access easier, but every appointment still involved a trip to oncology and a needle poke. It was never easy for her, but the Child Life team helped tremendously. They are truly some of the unsung heroes of pediatric healthcare.

Throughout it all, we did our best to give Willa the fullest life possible. We visited her friends at daycare, planned special outings, spent time at spray parks, and looked for every opportunity to create joy. I left my job shortly after Willa's diagnosis so I could be with her every day, while Mike became the sole provider for our family.

Every three months, Willa underwent sedated MRI scans of her brain and spine to monitor for tumour growth. The chemotherapy often caused her blood counts to drop, and even a low-grade fever could mean an urgent trip to the emergency room. Many times, we were admitted to hospital for several days while she received treatment to help her counts recover. With a weakened immune system, even a common cold could become dangerous.

Despite spending so much time in the hospital, Willa remained in good spirits. She knew the staff, looked forward to seeing familiar faces, and almost treated the hospital like a second home. While that reality was heartbreaking, it also made the frequent admissions a little easier.  

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