It was four years ago today when Jodi and I sat packed in a conference room with what seemed like the entire pediatric oncology and bone marrow transplant staff from UCSF, four years since that word, relapse, fell into air thick as mud.
I remember that day one of the bone marrow transplant specialists told us that we could take him home if we wanted, that we could make him comfortable, that he could eat anything he wanted. But I didn’t want to read the subtext. Instead, I listened to his oncologist telling us she had one more card to play, that she wanted to try one more thing.
After we left that room, everyone started to look at us differently. Some nurses gave us long hugs. Some nurses couldn’t bear to look at us at all. We were moved to a bigger room, given a bigger bed. But grasping what was really happening was nearly impossible.
Later that day, I told Caemon’s nurse in the anteroom of his hospital room, “I don’t know how to simultaneously prepare for my son to live and to die.”
Her eyes lowered. She leaned against the wall, slid down to the floor, and said, “I hate that I’m the one saying this, but I think you have to do the latter.” My blood ran cold. I simultaneously rejected the possibility and knew she was right.
The next day, Jodi and I met again with Caemon’s oncologist, and while she had talked about that last card she wanted to play, she told us very plainly, her head in her hands, “I don’t think I can save him.” I remember Jodi telling her we believed in her, urging her to remember miracles, and she recounted some.
We decided to stick with hope, to believe somehow in a miracle. There were other plans in the works: get him healthy enough for another transplant, start him on some experimental treatments, irradiate his spleen, consider a splenectomy, and so much more. The narrative around Caemon was that we were going to keep hoping as long as we could. We had to. If there were any specks of hope to be had, we were going to hang onto them like helium-filled balloons ready to drift away with the slightest tug of a breeze. Believing the alternative was too much.
Now, four years on, I sometimes wish I had allowed myself to grasp that he was dying, that I would have let some of those balloons go so that I could really see what was happening to my child. While I doubt much would have changed with regard to keeping him in the hospital, proceeding with the experimental treatments, etc., I wonder if the end of his life would have hit me the way it did. I wonder what it might have been like simply to hold him after he stopped breathing rather than watching huge teams of doctors and nurses trying to save a boy who had already gone. I can’t know that. It wasn’t his path, and his relapsed disease progressed far more quickly than anyone could have imagined. But I still wonder.
I don’t allow myself to think much about the day Caemon died. I lived it once, and the trauma of it is too much, but sometimes, when it does flit through my mind, and when I hear other parents’ accounts of holding their children as they die, I wonder what that must be like to simply know one’s child is dying, to prepare oneself. And maybe I did know. I never would have been ready. How could I be?
The next ten days are always a difficult march toward the end. Ten days were all he had between the time we learned of his relapse and the time he died. Ten days are all we had left to snuggle him, to take him in, and even though I hadn’t fully accepted he was dying, when I look back, I do see that I soaked in every moment, feeding him his favorite foods, reading him his favorite books, surrounding him in his favorite people the best we could, spending nearly every moment in his bed.
Maybe even without accepting his impending departure, I was, at least, able to prepare him by letting him know I was there, that I loved him with all of my being, that somehow I would survive. Maybe he needed to go just the way he did, the scent of hope still in the air, one last balloon floating away by his side.