A few months ago I attended at conference on Accelerating the Development of New Oncology Drugs for Children and Adolescents. The first day was packed with fascinating, complicated presentations all revolving around the issue of how to get new drugs and new treatments available in order to save more children with cancer.
Later that evening, I sat in the bar with several parents, oncologists and industry reps, as we discussed the need for research.
Many of the parents attending that meeting had lost their child to cancer. They were there because they are committed to making a difference for other kids- the kids diagnosed today, the ones of tomorrow.
At one point, a person (not a cancer-parent) asked me why, since my son had survived, I was so committed to advancing research.
It’s one of those questions that, when asked, feels like the answer is so obvious that you actually struggle to put words on it.
Why am I involved? Is it my place to be part of this battle?
My son Elliot was in treatment for almost a year, along with several other kids. I made good friends during those long days spent at the hospitals, friendships are forged in those difficult moments that are unlike any from the outside world.
Even my online friends, many of whom I actually met for the first time at the conference in Brussels, feel like people I have known for ages.
And it’s true, while many of these friends have lost their child, mine survived.
So I don’t have the grief that they do. I don’t have that intense pain that they all carry and hold tight within them, surviving every day, every moment, by taking one step at a time.
I feel incredibly sad for the loss of their children but to say I feel anything remotely close to what they feel would be wrong.
I don’t have the grief they carry. I am so incredibly lucky, because it is a grief that is incomparable to anything else, that I can sense and understand, but not really feel.
But I do grieve. I am sad and angry. Sometimes overwhelmingly so. Just not for the same reasons.
I don’t grieve for the loss of a child.
I grieve for them. These parents. These moms and dads who have suffered the loss of a child. My friends, who suffer, and will continue to suffer, even though they all bravely get up every day and choose to make the best of the day and try to look for the sun shining.
While I may not feel the loss of a child, I know what it is to visit a little girl’s grave with her mom. To pick a few weeds from between the flowers, to straighten the candles and dust the light snow off the little teddy bear sitting there. I know what it is to talk to someone who’s child had the same cancer as Elliot and didn’t survive. The injustice. I know a friend relives the last moments of her child’s life when she closes her eyes sometimes at night. I have another friend who is haunted by those last moments because the palliative care was not up to par. I have a friend who was by her son’s bedside when I first started to write this article (it always takes me several days to complete as I proofread several times) for his last few days, as the osteosarcoma he had could not be cured. He’s gone now.
Osteosarcoma, which has seen almost no change in treatment in decades. The same chemotherapies thrown desperately at the same cancer cells, which hold them back for a little while until they adapt and come back even stronger.
I feel such anger, sadness and frustration about this.
I don’t want to watch any more moms lose their child. I don’t want to hear any more dads talk about their daughter in the past tense. I can’t. I won’t.
I have to make a difference.