Hugo : Wilm’s Tumor

I hopped out of my car, holding my camera bag and a size 8 outfit. Plaid button up shirt that I’d carefully rolled the cuffs. Grey linen shorts that I had picked out purposely to match the blue walls of the hospital room. I was ready to capture beautiful photos of a boy that was loosing his battle with cancer. The family would look back on these photos for years to come and admire their beautiful son smiling and looking so handsome in his last days.

I never took the outfit out of my bag, and I never saw a smile.

As I eased open the door of his hospital room, there was a much different scene playing out than I had expected. Hugo lay on his stomach gasping for air struggling to talk while his nurse administered pain meds through his back. His mom bent over the top of him crying and his dad at his feet praying with tears running down his face. The nurse looked over at me broken, tears streaming, and mouthed, “I just don’t know…”

It was heartbreaking. I felt like I shouldn’t be there during such a personal and emotional moment. I thought about leaving, but the photographer in me kept me in the room. I sunk into a corner and watched like a fly on the wall, trying to hold back the tears.

The meds started to relieve a little of his pain and he struggled to turn over, as he did his hand patted the bed for his mother to sit at his side. She sat down, and he turned to embrace her, she pulled him close with his arms reaching around her neck and face nuzzled into her chest.

I asked if I could start taking photos of the moment they were sharing.

As I began to photograph the family, something both surprising and inspiring happened. They acted as if I wasn’t there. They were going to share with me a glimpse of their reality behind the walls of a hospital room.

Hugo began to get a little restless so Dad pulled out his phone, put on some music and began to sing to his son. The music was in spanish but I could tell it was worship. He raised his hand to the air and the whole family gathered around this beautiful boy. It was equally the most heartbreaking and beautiful thing I have ever seen.

In a moment of such despair there was also so much warmth. Love surrounded the room and a beauty that cannot be described in words. I’ve never felt so empty and full at the same time.

I stayed for about 20 minutes observing and capturing each priceless moment I could, slipping into the bathroom a few times to catch my composure, and then said my goodbyes.

Though these photos may not highlight the sweet personality or eye catching smile of this amazing boy, they do something even more important. They tell the real story of a courageous boy and the incredible love his family has for him. They share an insight of what kind of damage cancer can do and the importance of research and awareness on behalf of these children loosing their lives to this ugly monster. This is happening everyday to families, 250 families statistically. Daily. We can’t just ignore it because it hurts, or it’s hard to see. These families don’t get that luxury so why should we?

This boy, and his family in that room that day, changed me.

It’s an experience that I will never forget, and I don’t want to. I hope that maybe seeing these photos will change you. Open your eyes to the reality that many face everyday. Donate, get on the bone marrow registry, lend your time volunteering, even just sharing this story and spreading awareness helps. We can all help. Every one of us has something to give.

Thank you Hugo, for your gift.