Marlie Coward

Lily’s Story Told by her Family

Prior to July 2022, we had no personal experience with BC Children’s Hospital. We were a typical family of four and were grateful to have no serious health issues or concerns. However, this quickly changed… 

Lily experienced some headaches through the spring that were not of major concern but became more frequent closer to summer.  It was Canada Day, and while we were spending the day at the beach, she had a really bad headache. We tried some Tylenol, but it didn’t help. She was sick to her stomach and very lethargic, so it was time to go home. Her headache continued throughout the night, so the next morning we took her to the ER at Victoria General Hospital. They conducted blood work and a CT scan given the increased frequency of headaches and Lily’s declining state. After the tests and imaging, the doctor entered the room and our lives turned upside down. 

The doctor informed us that the CT scan showed a very large mass in Lily’s brain. They had contacted the neurosurgery department at BC Children’s Hospital and a helicopter was on its way to take us over. There are no words to describe the emotions we experienced. It felt like we were in a nightmare; this couldn’t be real. Here was our healthy girl: days before running in a track meet, riding her bike, playing piano, swimming, and finishing a successful year in grade 1. 

Unfortunately, Lily’s condition continued to deteriorate as we waited for the helicopter. She was bradycardic and lost consciousness. It was unbelievable how rapidly she declined. Thankfully, the amazing team at VGH were able to stabilize her and Luc, Lily and I were loaded into the helicopter. Off we went to the mainland under the care of the fantastic Infant Transport Team members.

We arrived at BC Children’s Hospital and were greeted by doctors and nurses. The next day, Sunday, we had some very difficult conversations with our care team which included: the pediatric neurosurgeon, pediatric neurosurgical fellow, social worker, and child life specialist. Every single health professional was kind, empathetic and considerate. We were so scared, but they were supportive and knowledgeable, and we knew we could count on them to figure the best plan for Lily. This plan was to conduct surgery to remove the tumour on Wednesday, but by Monday morning, Lily’s condition continued to quickly deteriorate. They told us they had to take her right in for emergency surgery.  The entire surgery team - the OR nurses, the anaesthetists, the surgeons themselves - were so caring and reassuring as they dealt with two absolutely terrified and emotional parents. Saying goodbye to her in the OR was the hardest thing we have ever done. 

The day of surgery was a long one, but we had tons of support with our incredible siblings and parents by our side. Many hours later, our neurosurgeon came out and let us know the went surgery really well. They had removed a tumour the size of a fist from the right side of her brain. We stayed in the PICU overnight under the care of the phenomenal PICU nurses who provided 1 on 1 care to Lily.  

The next day, we were moved out of the PICU to the surgical unit and her recovery continued. Throughout all of this, the support provided by BC Children’s Hospital was astonishing. Although it was intense and we were in survival mode, we were aided by so many fabulous health professionals and support services. In addition to the extraordinary nurses, surgeons, anesthetists, physicians, physiotherapists, social workers, and ophthalmologist that provided care and support to Lily and our family, she also experienced some very special support that we were not expecting. This included a visit from clowns, Fizzie and McFluff, music therapy, and pet therapy. Child life specialists were at our side each step of the way to explain to Lily what to expect during new experiences, such as MRIs and IVs. They also brought puzzles and toys to Lily’s room and took us to the playroom full of games, crafts, colouring and foosball. 

Days after surgery we were informed of the pathology results: the tumour was a malignant ependymoma. They also informed us that despite getting the majority of the tumour, some residual tumour remained, and a second surgery was necessary to get the rest. 

We got to go home, but the care continued with consistent follow up by the neurosurgery team. It was so reassuring to know they were a phone call away. A second surgery was scheduled for a month later, August 3, 2022. So back to BC Children’s Hospital we went. One thing we noticed was that Lily was not scared to go back. This speaks volumes to the extraordinary care we received and how comfortable and supported they made Lily feel. She knew they were all there to help get this “bad stuff” out of her head. 

The second surgery was successful and gross total resection was achieved. We are now on a monitoring plan through the oncology department, with MRIs and doctors visits every 3 months. Lily was back to school in September for the first day of Grade 2 with a crazy summer break story for her classmates. She recovered extremely well from the two surgeries and is back to swimming, piano, riding bikes and dance. And she is ready to run!

We couldn’t be more appreciative for BC Children’s Hospital and the exceptional care they provided. We want to share our experience to show how powerful the team and care from BC Children’s Hospital is. We wish that no one ever has to go through what we did, but this incredible facility and team is there if needed. Every day we send our positive thoughts and vibes to all the children and families that are currently there. 

We are so grateful to all of our family and friends who are joining and supporting our team. They have been with us every step of the way, offering constant love and support. Thank you very much!