Some days are manageable. Others aren’t. We didn’t go home last week as we had hoped. It’s day thirteen and everyday our departure gets delayed by another setback. A fever, a virus, mucositis, C-Diff, her inability to keep down formula. Today I had multiple people tell me that Izzy just seems to be getting hit harder by these rounds of chemo then most kids. When she is experiencing a side effect she experiences it to the maximum capacity. Whenever I ask why something is happening our team just looks at me and says, “Well, because it’s Izzy.” One theory is that the cancer is responding so well to the treatment it’s just wiping her out. Perhaps this is a sign of how hard the cancer is getting hit. It’s a theory, but it’s one I’ll hope for.
Regardless, this round has certainly taken a toll on her. She said something the other day I simply wasn’t prepared to hear. Something that took my breath away and my joy with it. “I can’t take it. Cancer is too hard for me,” she said throwing her head back on her pillow with tears in her eyes.” She had sores on her lips and all throughout her mouth. Her throat was raw and when she cried from the pain she covered her mouth afraid she would throw up again. Another side effect of the chemo, she had mucositis, defined by Wikepdia as; the painful inflammation and ulceration of the mucus membranes lining the digestive tract. She was overproducing mucus and would gag on it not wanting to endure the pain of swallowing. Her throat was so raw that she was throwing up blood. Graphic I know, but it’s the reality I’m living in. This is the picture of suffering I see everyday. I just hope it’s worth it in the end.
In a couple weeks we’ll have some idea if it is. Over the next week she will have multiple scans to see how the cancer throughout her body is responding. We’ll take a look at the primary mass but also the other various spots throughout her bones. Then, October 11th we’re scheduled for surgery. For now we’re waiting in our hospital room for her counts to rise and her body to heal from this round of chemo.
I would be lying if I said I felt peace. If I said I felt joy or hope or any of those things. I feel none of them anymore. I feel anger. Last night a child on our floor died. They posted a sign on the door asking for the family to have privacy. It was several hours before everyone left and I saw the nurses in there packing up his belongings. Today there’s a baby in that room getting treatment like the whole thing never happened. I started wondering how many rooms I’ve been in that a family has had their final moments with their son or daughter. A moment they will never be able to forget and I walk in and throw my bags on the floor like the room means nothing to me. But it probably means something to someone. Somewhere.
All of my life the things that I have been the most passionate about were areas of injustice. I have longed to pour myself into those areas of injustice and have impact. What an odd turn of events that my child would get cancer. That I would wind up spending weeks on end on an Oncology floor amidst one of the greatest injustices I have ever seen. I am surrounded by injustice and there’s no way I can possibly do anything about it. It goes against everything we know for children to die. For them to suffer in ways that are so horrendous and yet necessary for any hope of a cure. Such a cruel paradox.
So that’s where we are on our journey today. I wish, how desperately I wish, we were somewhere else. But we aren’t. She’s miserable and she can’t take it anymore. And I can’t take it away from her. On top of that I’m miles away from home, from the people I love and from my other child who asked just today, “How much longer will it be like this?”
In the midst of my despair I am reminded of an article I read a few weeks before Izzy’s relapse. In the article, The Promise of Pain, Ruth Haley Barton talks about “the great un-fixables of life.” She says if “we walk into the wilderness of our pain…(we will) discover that real faith is not a thought or a theory or a doctrinal stance. Real faith is what’s still holding you after the crisis of ‘faith’ has destroyed all your neat categories and systems of thought. We discover that real faith is what you know in the midst of not knowing.” When I first read the article it struck me. I had no idea I’d be living it soon.