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When I Was Asked to Be in a Documentary About My Son's Cancer

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Yesterday, I found myself at a cancer research lab, sitting on a chair bathed in bright light facing the camera as I talked honestly about the horrifying reality of losing my son Noah to childhood cancer. But wait, let’s stop and backtrack a moment. How did I end up here of all places?

Well, it’s quite a story.

A while back my friends at the Ewings Cancer Foundation of Canada​ (ECFC) contacted me about an exciting project they were undertaking. The ECFC is a non-profit charitable organization run by families of those affected by Ewing sarcoma who invest considerable time and effort to this cause. Forging new territory with a novel idea, they were collaborating to create a documentary about Ewing sarcoma. The goals of the film would be to educate, promote funding for research and spread awareness on many levels with respect to this disease. Filming was set to commence in January 2017 at various locations across Canada. Combining clips of leading Canadian doctors and researchers in this field with heartfelt interviews from those affected by this disease; this film was envisioned as creating a gripping and powerful view of this disease and research in Canada.

Part of the documentary was to be filmed in one of Noah’s oncologist’s lab right here in Nova Scotia, so imagine my surprise when I was asked to contribute and speak about Noah’s story! I must admit the thought of appearing on film was initially terrifying, but I immediately agreed because Noah taught me many lessons from the way he lived his life. He showed me how to face my fears because only by facing fear head on can we move forward. And he is also very clearly telling us that his story and that of the other kids/young adults involved with this film… and beyond… need to be told in order for change to occur.

In January, I was quite honestly reeling from the feelings of loss that are ingrained into my very being in facing a new year without him. Those first few weeks of January were sad and crushing. I can see why January has the dubious honor of containing what is thought to be the saddest day of the year. Blue Monday found me writing and reflecting, feeling melancholy for days gone by. As I prepared mentally for this interview, I revisited all the traumatizing memories of Noah’s diagnosis and death. It is very difficult to step back into those moments; they bring fresh waves of grief. So I must admit along with the gratitude I felt in being asked to tell Noah’s story, I had a bit of anxiety and sleeplessness leading up to my contribution to this very worthwhile project.

And now we have arrived full circle, dear readers; I am sitting in a chair opposite the film team with my heart in my throat waiting to tell Noah’s story. My thoughts drift off to the past for a brief moment as birthdays, anniversaries and holidays flash through my mind, bringing memories of days gone by. Some of them are filled with sorrow and others are filled with joy and hope for better days. I have memories of Easters spent in the hospital, birthdays uncelebrated and wedding anniversaries spent receiving the news that my child had relapsed and the prognosis was grim. But I also have other memories. That last Christmas spent miraculously at home and Noah so grateful for every gift.

Due to the aggressive nature of this disease, Noah would have needed scans for the rest of his life, not only to ensure the beast had not returned but to check his vital organs. The toxicity of the treatment can cause many life-threatening conditions later in life or even secondary cancers. The highs and lows in between barely allowed us to breathe in relief before the process was repeated. We were on a roller coaster of emotions; this is the journey of childhood cancer… up, down, backwards and so fast you can barely breathe. There was no regard to the fact that I personally do not like roller coasters.

We had a ticket to ride whether we wanted to or not.

And suddenly the nervousness disappears and there is only this – another golden opportunity for Noah’s voice to be heard. I feel at home with this great pain that is Noah’s loss. I could talk for hours about this subject. It is my passion, my life… my innocent son. The world needs to know, the pain has to stop; it is our mission today that this film be a starting point in ensuring that no more children and families be sacrificed to this beast called Ewing sarcoma.

They asked about you, Noah, who you were and what you were like. They asked about the nightmare of diagnosis and the horror of the treatments. They recognized your humanity, your soul and that you are not just a test case, a statistic in this battle. I could see the sadness in their faces, the compassion tempering their professionalism and for that I am truly grateful. Your story will be told and your voice will be heard, for change can only happen when we all start to listen and truly hear.

Here is a link to a sneak preview for this film. Will you listen to ensure our children’s voices will be heard?

Follow this journey on Noah’s Blue Ribbon Brigade.

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Thinkstock photo by eldinhoid

Originally published: March 16, 2017
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