Lilly flies a rainbow kite with her sister, Scarlet

The thing about cancer is… it doesn’t care

By Shelley Lewis

The thing about cancer is, it doesn’t care.

It doesn’t care about how healthy you eat, how much money you have, where you live, or how old you are. It affects everyone and can target anyone. In our case, cancer didn’t care that it picked on a sweet 12-year old girl, my daughter Lilly.

Lilly, Shelley, and sister, Scarlet

 

It didn’t care that her heart is bigger than her little body, her mind more creative than her hands can keep up with and her spirit more colourful than any rainbow. It didn’t care that she had plans to take on her very first babysitting job the next day, or have her first overnight camp experience the following week, or miss her family vacation to the Dominican Republic.

It didn’t care that she would miss her sisters 10th birthday or Christmas in her home with her family and every other celebration among friends and family. It didn’t care that it took her from her dog who adores her, her friends that admire her and her sister who is lost without her. It didn’t care.

But as with anything that attacks your child, you care more than anything, and you channel that care to nurture, love and protection. And that’s what I did as we began the fight on October 10, 2018.

In that second everything changed.

On that day, Lilly was diagnosed with acute myeloid leukemia.

As I sat behind Lilly holding her through my tears, I began to feel her body tremble with tell-tale signs of her own tears. I stopped and faced her. I tried to reassure her that we would do this. We can do this. She told me she wasn’t crying because she was scared. She was crying because I was scared.

In that second everything changed. If I couldn’t be brave for her, she couldn’t be brave. No more tears. Lilly even had a no tear policy in her room, she could kick you out if you cried.

A foot rash is what brought us to McMaster Children’s Hospital (MCH), but a cancer diagnosis is what kept us there for six months and five rounds of chemotherapy. It feels impossible to hand your child’s life over to people who were strangers just hours before, while trying to understand ‘parent oncology’, a degree you never wanted.

You immediately become a team. As a parent, you bring forth your knowledge and love for the child. The health care professional brings a wealth of science and medical practice. Together, you are a force to be reckoned with.

Lilly started treatment immediately. Shortly after, her hair started to fall out. Her sister bravely shaved her own head alongside Lilly. For the first time, I could see the sick. It had been hiding inside, but now it was before me and I realized we needed more strength.

As a parent you would shorten your life to extend theirs. I started to write. We wanted to channel all the positivity in the world in hopes she would feel the ripple effect to carry her each day. I was convinced she could feel it.

Lilly wanted a giant #lillystrong sign in her window to let the world know she was there and fighting hard. They knew, and the positivity followed.

Lilly holds up her strings of bravery beads Lilly receives chemotherapy

 

Kids in treatment collect bravery beads. They tell a story of their journey and are a testament to just how strong they really are. Lilly’s strand of beads reaches over 15ft long and has over 550 beads. These beads represent over 100 transfusions, over 40 needle pokes, over 40 tests, 29 days of chemo and countless procedures and dressing changes. They represent 159 days of a strength she never knew she had.

Each day, we carried the positive energy forward. On March 17, 2019, the luckiest of all St. Patrick’s days, Lilly left MCH through the same emergency doors she entered, cancer free. She has a long road to recovery ahead, but each and every day we are grateful. Through the brilliant minds at MCH and the endless support for Lilly around the world, we are able to say: The thing about cancer is, it doesn’t care. But we do, more than anything. We will never stop.

 

Shelley is mom to 12-year old Lilly, who was diagnosed with acute myeloid leukemia in fall 2018. Lilly continues to receive treatment at McMaster Children’s Hospital as an outpatient.