Monday, July 23, 2012

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.

Wednesday, July 18, 2012

I dont know what to say...

Today we saw the doctor for kiddo's surgery follow up. We assumed he would check the wound and send us on our way. That didnt happen. Sigh... Kiddo has cancer. He has a vascular tumor thats malignant. Its rare, there are only about 200 people diagnosed with it each year. They dont know what causes it. There is no known effective treatment. I'm pretty sure I'm in shock. We've been referred to a cancer specialist at Dana Farber Cancer Institute to determine what the next step is. Yup. That was my day. Kiddo is handling it well ... Better than me, honestly. The aspergers may be a saving grace through this. It is today, thats for sure. Karen

Saturday, July 14, 2012

Aspergers isnt curable! Accept it.

This is a tough post for me because it brings home the daily difficulty of living with aspergers syndrome. In order to explain, I have to go back a week...

On Wed., July 4th, kiddo called my attention to a lump on his abdomen. It was about the size of an egg and protruding just above his right hip. There was the tiniest mark of a bruise, already fading. I assumed he'd banged into something and told him not to worry about it. The next day, he showed it to me again. It looked different - bigger and darker, and it felt (for lack of a better word) meaty. We took him to the ER. The did an ultrasound and discovered a mass. A follow up xray showed no other abnormalities in his abdomen, so the surgeon on call came in and talked to us. He said to call his office in the morning and arrange an office visit to remove it for this week. He also urged us to return to the hospital if anything changed. None of us slept that night as we worried about the possibilities (tumor, cancer) that this weird mass represented.

We called the next morning and set up an appointment for Wed. But late Fri. Night kiddo freaked out. He was convinced the thing was getting bigger and attaching to his organs. In looking at it, it was definitely sticking out more and it felt hot. So back to the hospital we went. We spent the night there and they did a CAT scan, which showed the mass wasn't growing, but was pushing out more. They said it was a mass of tissue and blood, and sent us home.

Over the next few days, we stressed about it. I dont think any of us slept more than an hour per night. On Wed., we went to the surgeon's office. He felt removing the mass could be done right there, so he gave kiddo a local numbing agent in a series of shots, cut him open and popped out the mass. And thats when things went horribly wrong. The mass was a blood clot and it was the only thing keeping a ruptured vein from gushing. The surgeon had an 'oh shit' moment where I could see him debating whether to call an ambulance or deal with it. He dealt with it. What ensued was a half hour of major surgery where kiddo got the vein stiched, mutiple things cauterized, four layers of sutures and a top layer of tape. There was a lot of blood, some screaming from the pain of a procedure that he should have been unconscious for, and a whole lot of shots to deal with the pain.

I think this may have been what it was like to undergo surgery in the days when they gave you a bullet to bite on -- only a lot more sanitary.

In the end, kiddo had an incision 2+ inches long and 1+ inches deep. We go back next Wed. To make sure everything is healing properly. 

And all of that is not what has me so upset today. 

See, kiddo's bandage needed to be changed today. His aunt is a nurse and a wound specialist. Since he's still so freaked out about everything, he wanted her to change the dressing. She and my brother-in-law came over. While she changed the bandages, my B-I-L proceeded to unmercifully tease kiddo. Kiddo asked him repeatedly to stop. He wasnt finding it funny. I asked him to stop because I thought he was being an ass, and I could see it was upsetting kiddo. Hubs asked him to stop repeatedly, as well. But he just kept on with the snarky rudeness.... 

And thats when kiddo flipped him off. B-I-L called him rude, scolded him, stood up and stormed out of the house. Kiddo tried to apologize, but got shit back for it. 

S-I-L finished up what she was doing and followed him out. I chased after them. And thats when s-i-l said this... 

She told me that kiddo had better learn how to take teasing, because he cant go around reacting to people like that. That he needs to learn the world wont tolerate his differences or his disability. That he needs to learn that people are going to tease and him and he needs to take it. That his disability is not an excuse for bad behavior and that nobody is going to want to have anything to do with him. That if he thinks he can get away with blaming his behavior on his disability, he's mistaken. That he needs to grow up and gain a little maturity. Then she suggested that I have his psychologist work on that with him. 


I want people to know that aspergers is not something you 'grow out of'. Not understanding social nuances or bullying behavior? Not gonna change with maturity. I dont understand how people can behave the way my b-i-l was behaving, and not take into account that the person theyre teasing mercilessly is being hurt by it - and they dont stop or give a shit. 

Kiddo's brain is wired differently. He doesnt get it. He'll never get it. 

I'm thankful that he's survived the cruelty visited on him by people. He hasnt taken his life yet, tho he's contemplated it pretty seriously. He's here and he is who he is - disability and all. I don't think he's the one who needs to grow up or get counseling. 

And thats what has me upset. 

If family doesnt make any effort to understand his disability, why will the rest of the world? 

Love your kids, people. Accept them for who they are. Each and every one of them is beautiful. The world is not. 

Kiddo cried for an hour and talked about how much he hates himself after they left. He blames himself for what happened. He'll carry that moment forever. The moment his uncle finally let him know just how little he cares about him. 

 And I will carry my sister-in-law's words.

At least now I know for sure why we're excluded from things. I though I'd offended them somehow. But its not me and its not kiddo. It's their inability to accept him for who he is.

Think before you act. Be aware of others' differences. Accept them. 

 You cant take back that kind of damage.