The first, and possibly the longest lasting, feeling of a cancer parent is “guilt”. Shock, anger, pain, desperation are all there; they come and go like tidal waves, but guilt, of different shapes and sizes, never leaves you.
First, you think you are responsible for your child’s cancer. Maybe it was genetic; maybe it was something you did during pregnancy. Experts tell you immediately that this is not the case with most childhood cancers, definitely not with neuroblastoma. The only statistically insignificant correlation is if you have childhood cancer in your family. Neither his mother, nor I did. In any case, even if we had it, it would have been irrelevant, scientifically speaking. Young kids, i.e. babies, develop cancer usually when they are still an embryo. One gene goes awry, that’s all! Chances are one in a million so far as neuroblastoma is concerned. But that 1 (ONE) is everything to you. Like the other numbers you will learn to value, such as the prognosis, the odds of survival with this or that treatment..
When your rational mind takes the control back, the irrational hits back even more forcefully. You become superstitious: what if all of this is happening because of some mistakes I made in the past? Could this be some sort of divine payback? Rationality does prevail in the end, though not before you go through several sleepless nights.
But guilt works in mysterious ways. There is the guilt which makes you think “Am I taking good care of him? Could I have done more? Should I look for more options? What can I do to calm him down when he is in pain?”.
Then there is guilt by association – I wish I had a better term. You want to take his place; you want to become sick in his stead. You feel it is as if it is your mistake that the monster has chosen him and not you.
And the worst kind of guilt. What if things really go wrong? What if you have to make that “fateful” decision? Should you pursue other, alternative, avenues or… We’ve been there once. We’ve survived it; he’s survived it. I don’t know whether I can survive it again…
(Autumn Sun, Egon Schiele)