A Month of Hope for the Gwilliam Family

Atticus Gwilliam was diagnosed with a brain tumor in August 2016.

September is Childhood Cancer Awareness Month. But What does ‘awareness’ really mean?

To become aware? To obtain new knowledge? To gain a new perspective? To become informed? To become concerned or even empathetic to an unfamiliar situation?

The concept of awareness can take on many faces, and its perception can change depending on the person you talk to. To the mother who spends her days at a children’s hospital, it’s a sense of defeat and desperation about the path that life has taken her. To the father who lost his son, a harrowing and solemn reminder of a fierce battle once fought. To the general social media patron, it may be a month of raw images that they don’t fully understand.

This was the crossroad we found ourselves in as we entered the doors at Seattle Children’s Hospital 12 long months ago. The world of childhood cancer was not something that was on my radar as a mother of three (with one on the way), let alone with regards to one of my own children.

When my husband and I entered the hospital and saw firsthand the number of sick children that called these walls home, it was like a slap in the face. The whole experience was so surreal. I felt like a narrator was about to say, “You’re moving into a land of both shadow and substance…you have crossed over into the Twilight Zone.” I mean really! It was like an out-of-body experience that is now our family’s new reality.

Here we were talking to the surgeons about the repercussions of removing a softball-sized tumor from our son’s brain. Atticus was just 18 months old when he was diagnosed with, which was later confirmed to be, a Choroid Plexus Carcinoma. This is a rare form of brain and spinal cancer found in only about 1 in 3 million children. I remember my husband and I sitting down with our amazing neurosurgeons, Dr. Rich Ellenbogen and Dr. Amy Lee, after a long, emotionally draining surgery day and being told that our son’s tumor was malignant.

Finding our guiding light in the storm

I can still feel the wave of fear, hopelessness and sense of defeat that just hit us. Not to mention the utter terror that immediately followed. We were crushed, and our world was completely turned upside down. I don’t recall much from that day, but there is one thing that I will never forget. In that moment of desperation, the only question we could muster to ask was, “Do we have any chance of beating this?” Because to be quite honest, we were doubtful.

Dr. Ellenbogen answered without hesitation and with conviction, “We always go for a cure, and we can beat this!”

It was like a huge weight had been lifted from our torn and beaten shoulders, our hearts skipped a beat, and in that moment, amidst the storm, we found what we were so desperately searching for –we found HOPE.

This proved to be our guiding light throughout our entire cancer journey as a family. We found hope in the nurse that cared for our sick child, in the residents that took the time to get to know our family, the support staff that ensured our rooms were always clean for our sick son, and in the unwavering optimism of our oncology and neurosurgery teams. We, as parents, found ourselves not only in uncharted territory, but adrift in a terrible storm with no life vest or land in sight. But that hope carried us through it all.

A month of hope and action

September, or Childhood Cancer Awareness Month, has become a month of hope for the Gwilliam Family. I could sit here and tell you that this year alone, over 10,000 children will be diagnosed with cancer in the U.S. and that cancer is the leading cause of death from disease in children. I could sit here and tell you that out of the billions of dollars set aside for cancer research, less than 3% of the National Cancer Institute budget goes to childhood cancer. But, does this really make your more aware? Does this prompt a sense of empathy?

In our family, Childhood Cancer Awareness Month is a time of hope and action.

I recall a suggestion that, “One of life’s early lessons should be that there is great power in the compounding effect of the little things that we do each day. Small and simple things are at work in your life right now, working either for you or against you.” We in the cancer world live off these small things. We live off the hope that the 3% can be stretched a bit further. The hope that more children can survive cancer. We see the hope in the eyes of parents living at the hospital. We see it in the eyes of nurses and doctors as we try new treatments. And we are empowered by hope and action.

The hard truth is that children are dying every day waiting for promises of new treatments that may never make it in time, despite the heroic efforts of those that care for our kids day today. Our kiddos deserve more than this. They deserve their dream to obtain the simple things in life that we take for granted, like going to school or playing at the park. And they count on our actions for it to become a reality.

This is why we advocate for Childhood Cancer Awareness Month. Our goal is to raise awareness, to promote understanding and empathy, and to empower those who hear us to action. We, along with many others, continue to share hope and continue the search for a cure. We love Seattle Children’s mission of providing hope, care and cures for all children, which echoes each and every parent’s most heartfelt desire. Together, through action, we believe we can achieve this incredible goal.