Living in the after means living with a wolf at your door. The first time around, we didn't feel this way. In the back of our minds we - rational people for the most part - knew there was a chance of relapse but we also knew there were additional treatment options. We felt like we had a 'Plan B' and that gave us comfort, even if not consciously. 

When Fiona relapsed we executed on Plan B and, well, it didn't really work. Her cancer was chemo resistant and we immediately started to have to improvise. Within weeks, there was a goal of getting her into remission for transplant but there was not a clear, tested path to get there. She is still here so, obviously, shit worked out in the end but it was a hideous process filled with torturous choices and times when we really questioned whether we were doing any good or just inflicting harm. To survive transplant and all the downstream complications - and she had a tonne of them - was almost more than she (or I) could bear.

While we were in Toronto at the Hospital for Sick Children, there were a number of children undergoing a second transplant. These were children who were dealing with a second or third relapse of the disease. There are two children in particular I can remember in vivid detail. One was a teenager who was experiencing the side effects of skin Graft-Versus-Host disease. He was unable to walk, he was in pain to the point he cried out during the day and night when he moved and had to be sedated to have his bandages changed. Another was a beautiful 'tween' who was transplanted the day before Fiona and who, like her, experienced many of the same complications. She struggled with the side effects of the treatments including high-dose steroids and the physical effects. She was wheelchair bound and her mum shared with me that she was so depressed about her appearance she refused to have mirrors in the room. Both of these children - children old enough to understand what is happening to them and the very real life-and-death struggle they are in - had parents there, attentive and doing all they could to help. Both of these children had parents that felt they were doing the only thing they could - save their child's life and they questioned themselves everyday. The struggle for them was palpable.

I'm sure it wouldn't surprise you to know when you are in these places you see parents weeping outside a door or being hustled into a quiet room for bad news. While this happened on a not infrequent basis, it wasn't the saddest thing for me. The most heart-wrenching thing was watching a parent brace themselves - physically brace themselves - against their child's door before going in. I would watch them close their eyes, take a breath and silently tell themselves they could do it one more day. They could pretend they weren't tired or be positive or endure their child's pain or rage or fear and not give into their own. They would put their own emotions and reactions in a box and just keep hanging on - with no finish line in sight. I would see them come out of that room with shoulders slumped for a break or maybe to let someone take over briefly, and I could almost see them dragging their spirit behind them like a damp towel.   

Tim and I watched a lot of this together. We had many times in the quiet, finding a nook at the end of the hall to eat a hurried dinner together, and we would take this in. We would ache for these parents together, briefly forgetting to feel sorry for ourselves, and - because it is who we are - we would make plans for 'what if'. During her transplant and throughout her recovery, Tim and I were almost always on the same page. This was no exception and we agreed that if this treatment didn't work or if she relapsed again, we would not pursue alternatives. We were not interested in 'clinical trails' to prolong life or scramble for a miracle. We were not going to do another transplant if she relapsed later on. We agreed that we would take whatever time we got and call it a win. We said we wouldn't be greedy and subject her to more later.

But I don't trust myself to do it. I don't think I can keep my promise. I'm greedy. I need her to stay.