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You know the movie, “One Flew Over the Cuckoos Nest?” I wish pediatric cancer were far enough advanced that what we are experiencing today would look equally astonishing and barbaric.

Some pediatric cancers have made huge advances in cure rates (not toxicity); but others, like osteosarcoma, are sitting around with basically the same treatments they’ve used for forty years. Surgical options have improved. There used to be no choice except amputation. But the chemos? Horrible. So toxic and the actual cure rate for osteo is terrible. I’ve been trying to spare Liam the facts. We’ve been really honest with him that this a fierce battle. He knows the side effects of the chemos he’s taking. He knows that this cancer is an especially bad one and he asked me point blank soon after diagnosis if this means he has more chance of dying and I couldn’t lie. But the day his surgeon told him there were microscopic tumor cells left per the pathology report, he cut straight with facts in front of Liam while I cringed.

Long ago when they did only amputation (wide margins) and no chemo, there was only a 17% survival rate. Now that they also do chemo, osteosarcoma has a 54% survival rate irregardless of surgery type (limb salvage, amputation, rotationplasty). Fifty-four. That’s basically one in two. And he told him all this in the same paragraph of his abysmal necrosis and positive margins. Liam is only twelve, but he’s incredibly smart. I couldn’t believe he was telling him all this. I know in my heart he was trying to be encouraging. That in spite of the margins at least the chemo was helping him. But it felt like anything but hopeful in the face of 5% necrosis. I wished Liam wouldn’t have heard that. Especially not the day before going into yet another surgery.

Survival rate doesn’t mean cure. It doesn’t even mean event free survival. It basically means that 54% of the population is still alive after five years. If you die the day after five years, you’re still considered a survivor. If you turn twenty-one and die you are still a survivor because you aged out of the pediatric part. If you relapse and relapse and relapse and are still in treatment at the end of five years you are still a survivor because you’re breathing.

Some days I feel as though we are moving in a horror movie. I wish it were.

I’ve seen and heard things I’ll never unsee and unhear. The nurses in gowns and gloves and masks and goggles to avoid any potential exposure while holding a sealed bag of chemo, the contents of which are going to flow straight into my child’s bloodstream next to his heart.

The dad carrying in his one year old and stopping by the desk. The bald baby looks too young to talk, but extends a hand and says, “arm” for his wristband in that innocent way babies do when they know the rhythm of bath or brushing teeth. That moment crushed me.

The child whose speech pattern identifies with downs syndrome a few cubicles over who yells nonstop for fifteen minutes during port access and then continues to talk loudly about everything and nothing and mostly repeating, “Get it out. Get it out right now,” for the next two hours.

Our roommate in the hospital who was about five who screamed and screamed and screamed and screamed and screamed for his mommy, that his tummy hurt, that something was trying to kill him, that he was going to die.

Another roommate only about three or four who had a nosebleed that would not stop because he was so neutropenic he had almost no platelets left. This is what happens with chemo. He screamed in absolute terror as they tried numerous interventions to stop it over a period of two hours while he bled so much he needed a blood transfusion.

Yet pediatric cancer gets almost no funding and much of what happens in treatment is using drugs that have been tried on adults for other cancers. It’s so wrong. There have to be so many unexplored avenues that are far less toxic and effective.

The difference between “One Flew Over the Cuckoos” nest and our story today is that the nurses and many of the doctors are so compassionate and respectful. Honestly, I don’t know how they manage to watch this level of suffering day after day after day and still offer so much care. The nurses are like angels. But how I hope that someday, very soon, people will watch the movie of these kid’s very real life and shake their heads in horror at how lacking medical science was.

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