Epitheliod Hemangioendothelioma (try saying that fast)

So, we got to see the pathology report today. The official diagnosis is epitheliod hemangioendothelioma. What is that, you ask? Its a malignant vascular cancer. In kiddo's case, it grew rapidly (at least as far as we noticed). From July 4th when he pointed it out to me, until July 5th when we took him to the ER, it had changed into a meatier feeling thing. By July 11th, when it was removed, it had grown, was protruding significantly more and had a dark appearance.

No one knows what causes this particular form of cancer. But its what kiddo has. It is a low grade cancer, but with a high metastatic rate (meaning it wants to spread) and because they removed it thinking it was a blood clot, there's no guarantee they got it all and that they didn't do more damage than good.

We see a medical oncologist tomorrow at Dana Farber Cancer Institute in Boston to find out what that all means.

Kiddo has decided to forgo college - something he was looking forward to until we heard the words malignant cancer. His thoughts are that he has Aspergers Syndrome and a rare cancer - how is anyone going to relate to him? I can't argue it. I just want to spend every minute of every day in his presence. Life is too short.

We're making a bucket list. He wants to go to New York, shop for anime, see the statue of liberty, ellis island and the empire state building. He'd like to see David Letterman live.

He'd also like to go to Japan. That's a loftier goal and I don't know that its possible, but we'll see. I'd do just about anything to give him what he wants. He doesn't ask for much.

He's been keeping himself occupied working on his computer cluster. He can now access it remotely from both his laptop and phone, so that should he end up on an extended stay in the hospital, he can work on his secret project. (A revolutionary program for computer users everywhere.)

He's genius enough to accomplish it.

Today is an anxious day. It's a sad day. I find myself leaking tears without even realizing it. Tomorrow we will know the extent of what we're facing. What he's facing. Until then, I just have to breathe.
Karen