Love, Fear, and a Chance Encounter at Duke Children’s Hospital

Love, Fear & A Chance Encounter at Duke Children’s Hospital

I’d been holding my breath for the last five hours, struggling through what would end up being my daughter’s 9-hour surgery at Duke Children’s Hospital, when she sat down. Her name was Sue, and she asked if the seat next to me was taken. We were in the waiting room. I was positioned so that I could stare at the wall that separated me, in the waiting room, from the hallway that led to the operating room where my daughter was. Pretty much the closest I could get to her.

To be honest, I could barely hear Sue’s words at first. I registered that she seemed kind, that she was friendly, that she was waiting for her son. But it took a few minutes until I really heard her, too frozen in my own fear. But words started slipping through. I apologized and asked her to repeat her last few words. Her son, Howell, was getting another MRI. He had brain cancer. He had Stage 4 brain cancer. He’d been in treatment since he was nine years old. He was twelve now. Things were tougher than she’d ever imagined, and the two of them were pretty alone in the world.

They’d lived in the Ronald McDonald house for a year. They’d lived in-patient at Duke Children’s Hospital for four months. They were now living in an apartment near the hospital, and somewhere in the last few, relentless years, her husband  – his dad – had left them. As they moved through all the chemo, radiation, surgery and endless cancer treatments, they had to work to figure out how it could all get paid. She had my attention now. I physically turned towards her and felt my fear ebb just enough for empathy to have a place to wash in – and a separate part of me registered that this was the first time I had experienced a break from non-stop anxiety since the night before, as we packed up for our daughter’s massive surgery, a full week in the hospital to follow, another six months of recovery.

Her son’s name was Howell. And they had been hoping for better news for a while. They kept not getting it. I looked at her and fully felt everything she felt. At least at that moment. All that love and trying. It took me squarely out of my cage of fear and made me want to do something – anything – to lighten her load. I told her I’d love to do a photo shoot of the two of them together. He was her whole world, she’d said. I wanted to do that shoot as soon as possible. Our daughter needed round-the-clock care for weeks. And then things started to ease up a bit. We scheduled the shoot as soon as possible, a few weeks after we’d met, and I met them at Duke Gardens. Howell is a 12-year-old boy. I have a 12-year-old boy. It is remarkable to me how much 12-year-old boys can be alike. He is silly and funny and interested in much of what my son was. But he was also very weak and got “woozy” very easily and had clearly been through the ringer over the last few years. He laughed easily, he had loved playing soccer, he had every faith in his mom. And his mom was trying to move through this, to give him as much happiness as she could. I think that’s the thing about caring for a very ill child, you can get quite lost in it. Sue has made her life about caring for Howell since he was born, but it’s been round the clock since November of 2012, when he was first diagnosed, and it’s been sadly challenging on more levels than most ever have to experience. You can read much more about their experience here. I took these photographs of them, and it just so happened that I delivered them to Sue on her birthday. A gift she said was the best birthday gift she’d ever received. Given that I knew what caring for a child who was seriously hurting really meant at this point in my life, that made me cry. It’s easy to forget sometimes how powerful portraits of those you love, the love you have together, can be. I’d like us all to help give them a little more, to help them hope. As anyone who understands what major medical hardship can mean, Sue and Howell face a great deal of expenses. There is more to come. They could use some help. They could use a whole lot of help. If you can contribute any amount, please consider doing so by going here, to a Crowdrise page I just set up. Here is just the beginning of their story, that kicks off with a Lifeline Ambulance ride to Duke Children’s Hospital. There’s a lot more on the fundraising page. Howell is now 12 years old. He has Stage 4 Pineoblastoma Brain Cancer. He was diagnosed at the age of 9 years old. He is silly and upbeat and full of life. He also gets tired easily, is in a wheelchair most of the time, and feels woozy after walking or even standing for too long. The first description is who he is; the second describes what cancer can do. After four years of treatments, the cancer has spread to his spine. His mom, Sue, has been told there is nothing more they can do at this time. But there are several possibilities that they can still try for, experimental treatments that should be approved in the next few months… Read more (and please consider helping – and sharing!) here.