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They Never Called It Cancer

Our daughter had cancer, yet they never called it cancer.

First they told us they found a mass by her brain.

Then they told us that they think the mass is a chordoma, an extremely rare type of brain/bone tumor.

They told us that she had a poorly differentiated clival chordoma and it should respond to chemotherapy.

Then the tumor doubled in size, they started chemo immediately, yet it was never called cancer.

Chordoma are skull and spine based tumors typically found in adults. Yet, here we were, our 14 month old daughter had a chordoma.

We were naive in thinking that this was curable. It was never called cancer, so it must have a cure. There was a plan. Brain surgery to remove as much of the tumor as possible. Six months of chemotherapy. Possibly another brain surgery to get the rest of the tumor. Then radiation to kill any remaining tumor cells. This was going to work.

What we didn't know was how deadly pediatric chordomas are. We didn't know that no children under the age of two survive this. We didn't know that "the plan" wasn't a tried and true way to treat pediatric chordomas. Truth is, there is no set "plan". There hasn't even been enough research to support a plan. There is for adults, but not for children.

Today was the day we learned that Sloane had a mass in her head. Today was the day that we didn't know the battle we had ahead of us. Today was the day that shattered our world. Today was diagnosis day. Sloane had cancer, yet they never called it that.

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