We received a letter in the mail last week from the Seattle Cancer Care Alliance. It seems they have been storing a sample of Ben’s cells since his diagnosis in 2007. The letter was sent to inform us that we now must decide what to do with them. Enclosed was a form on which we could check donate to science or discard. At first the answer was simple – of course donate them for research. After all, that is what we are in the business of now. But nothing is simple when your child is dead. Nothing is simple when in a matter of seconds you can be transported back to another life. One in which our son was here. One in which he had tubes coming out his chest from which they took daily blood samples. One in which we still had hope.
While I am functioning pretty well now, a small thing like this can feel like getting hit by a truck. It opened up what in the initial shocking days of grief I could not fight – a very strong, biological, physical, longing to be with my son. To think that some part of his body was here, in some freezer at the SCCA brought out all my craziness. I told Jeff I wanted the sample. But that is not Ben. I know that. But it was in him. And he was in me. Why do you want it? I want to have it as proof that he was here. That he was alive. That at one time he had blood running through his veins and a beating heart. Evidence that I have more than one son. Because the further I get from his death the more I can start to think I made this all up – that he wasn’t really here. And this is proof.
Thankfully Jeff understands the way my grief is manifesting and kindly says that it is up to me. But how would we store it he asks practically – we don’t have that kind of freezer. I don’t know. Maybe I will wear it around my neck like Angelina Jolie and Billy Bob Thornton did back in the day. Would the cells go bad I wonder? I don’t know. Would they evaporate? Or would they grow? Would they take over the bag they were in? Would they eventually shatter the container and spew all over me? Or could I grow the mass and then smash it with a hammer? At this point in my monologue of madness I am guessing Jeff thinks it was a mistake to engage me in this. Perhaps he should have descretely checked donate and sent it back. But it is too late. Pandora’s box has been opened and I am undone.
I just want my child.
What would the SCCA do if I just showed up there I wonder? If I walked in and told them I was here to pick up what is left of my son from the cellular therapy laboratory. I imagine they would look at me horrified. I guarantee they would call down a social worker to talk with me. But here is the thing – I don’t need a social worker. I am not someone who is unaware of my own instability. I get what is happening to me. I am having a major bout of insanity and grief – because my son is dead. And you unintentionally provoked it by sending me this notice letting me know that some small, weird, probably gross sample from within his body is somewhere in your facility.
Please return this form within thirty days they ask – with a copy of his death certificate. Seriously? Don’t they know he is dead, hence this letter? The correspondence sat on our counter for the better part of a week – neither of us able to pull the trigger. Until yesterday. When we asked the SCCA to please transfer Ben’s cells to the Ben Towne Center for Childhood Cancer Research. We are after all doing the pre-clinical trial work for the next submission to the FDA. For which type of pediatric cancer you ask? For neuroblastoma.