For more then eight years I have been photographing children who are fighting serious illnesses. It is a passion project, one that makes me a better person, and a better photographer. One that sometimes, leaves me confused or in the case of when there is loss, one that shakes my foundation maybe a bit too much.
I started documenting sickness when it was for someone really close to me, as a way for the family and child to be able to look back and process their journey. I have always wondered why, in society, we just photograph the easy joy? Isn’t it what we experience and how we walk when we are “in the trenches” that is a substantial part of who we are and where we find our growth? So I hoped the photos would be a gift – one that would help them celebrate their hardship in a different way and allow them to later look back and realize how much they travelled through.
Most of the children I have documented were young, little warriors, who likely didn’t understand the true magnitude of what they were facing. Their were photo stories of waiting in lonely hospital rooms, receiving needles, crying on a parents shoulder and these were also peppered with moments of giggling fits, building towers and racing around – there was moments of joyful relief in the photo stories.
But it is different with a teen. I photographed Tessa, a Comox Valley Teen last year for You Are Not Alone, (YANA) a Comox Valley Charity that offers help to local families who need to travel to access medical treatment for their children. I spent time with her at a YANA apartment, at the school where she goes just for tutoring and at her house. The photography aspect was more difficult then I had ever experienced.
I kept saying to the photographer in myself maybe you are missing what is happening, these images maybe aren’t dynamic enough. But the truth is, when you are 15 and going through all the steps to try to stay afloat, and wondering and hoping everyday that you get the chance to turn 16 – not much happens. You have alienation for friends, schooling alone, giving up hobbies – waiting, fighting being emotionally low, passing time and feeling sick.
Tessa has Fibro-la-mellar Hepatocellular Carcinoma, a very rare cancer that only 200 people per year are diagnosed in the world. One in 5 million chance to get this, and is the result of a gene mutation. Chemo is largely ineffective, surgery is enough for some and for those that are fortunate to have caught in time, and her best hope is a liver transplant.
Well, earlier this month, approximately a week after the annual YANA Annual Big Love Fundraiser, (which raised a record $87,000 – whoot! whoot!) Tessa received that call. A liver was waiting for her. Her life had been like a ticking time bomb, as the cancer was spreading and if it kept doing so she wouldn’t have been eligible for a transplant.
On March 6 Tessa had her liver transplant, shortly after, there were complications and her body rejected that liver. But, promptly she was in surgery again receiving the right liver for her, the one that will give her a future.
And today, she wakes up, not in the hospital, but back in the YANA apartment, her home away from home, on Oak Street in Vancouver.
Tessa, I hope when you come back to us on Vancouver Island that you laugh easily with your friends, make last minute decisions about how to spend your day and celebrate that it will be okay for you and your mom to forget your cell phones as you won’t have to be waiting for a life-saving call.
Tessa, I know you as a difference maker, you already have inspired, taught and influenced change in me, and others. Your matter effectiveness has schooled me. Your decision to live each day to your best, and to be kind to yourself when you need it is wise beyond your 15 years.
You make us all braver.
I hope for you now rest and some carefree days enjoying the moment, because, you now know there are many more to come.