Happy Holidays!

Happy Thanksgiving!

Happy Halloween

Ten Years Old!!!

Angioma Alliance turns 10 years old this year. And though we can count the years, it's impossible to count exactly how much good it's done...

Read more in the Angioma Alliance newsletter here...

Want to show your appreciation????

Go here and go here for some ideas on how...

(And HAPPY BIRTHDAY to my youngest son, who turns 14 today. YAY!!!)

Angioma Alliance Summer 2012 Newsletter

Check it out here!

Sa-weet!!!

Amazing video...

Check it out.

 http://www.godvine.com/Man-Barely-Able-to-Stand-on-his-Own-Does-the-Unthinkable-Amazing-1476.html

2012 Angioma Alliance Patient and Family Conference

Don't forget! 

June 22-23rd. Check it out here and here. 

2012 Annual CCM Scientific Meeting

Angioma Alliance is hosting the 8th annual CCM scientific meeting to be held Nov 15-16, 2012.

Experts in the field will gather and discuss the latest advances. Stay tuned for more info.

Climbing the K2

Today my son BBB is graduating high school.

It's taken almost 21 years to get here, and I didn't think we'd ever arrive. Certainly not in one piece.

Seventeen-ish years ago, we'd sat down with our town's preschool special education director. She explained to us, two parents stuck in this brand new messed up world, what lay in front of us-the IEPs, behavior plans, case managers, and inclusion- and how it would all lead, one day, to one goal: graduation.

It was a bit like plopping two barefoot, supply-less, and naked hiking amateurs at the base of the K2 and saying I'll see you on the other side.



Yeah. Right.

Other side.

Never gonna happen, was our immediate thought.

@%$#*!, was our second thought. And third.

And twenty-fourth.

Little did we know there were people-teachers and administrators and doctors and counselors-stationed along the way, waiting for us. Little did we know they'd drag us, pull us, push us, and even roll us toward that summit and back down the mountain. Little did we know they'd give us the tools we needed to get us through it.

But they did, they got us through it. We climbed the K2.

Of course, this finish line merely marks our approach to a new mountain. This one, transitioning to the adult world and independence, is Mount Everest, the highest in the world. And I'm not convinced the trails will be dotted with helping hands this time around. Or, at least, not so many. That's just the harsh reality of funding and community services for those with disabilities.



It is what it is, I suppose. And what it is is a celebration, today. It's an ending, and a new beginnning, and a time to give thanks and gratitude and eat donuts.

Yes.

We made it. My son made it.

Life is very good today.

Of Cat and Scans

BBB wanted to know two things: what was wrong with him and how they got cats to scan. Explaining the cats was the easy part.

     “Carefully,” my husband, said. “The trick is you have to hold the cat just so, and then run them quickly across the scanner.”  He sighed deeply.  “It’s not easy, though. They don’t cooperate a lot of the time.”

     “Are you lying?”

     Hubby shook his head, looking affronted. “Me? Are you calling me a liar?”

     I watched BBB frown, unsure whether to believe his dad yet wanting to believe him so badly, for how cool would that be? But I could see he was also latching onto the more important but hidden message. Brain damage or no, he understands far more than we'd like.

      “Then what’s wrong with me now that you need to scan cats?”

     “If you want to know what’s wrong, then you need to talk to the big guy.” Hubby pointed to our neurologist, who stands all of five feet tall and was staring intently at his computer screen. It was a good way to pass the buck.

     “Is that true, Dr. xxx?” BBB asked.

     “Mostly. I find if you sweet talk them a little first, they’re more likely to cooperate.”

     Dr. xxx is our thirteenth neurologist; I like to think this makes him our lucky charm. He thinks it makes him all that’s left. He’s lying, of course, not just about being the only doctor left, but the cats. They don’t really scan cats at Children’s Hospital, just brains and other myriad body parts. We don’t tell our son that, though. He’s also more cooperative about tests if he thinks it’s true.

    “See this here,” he said, pointing to the computer screen. “There’s a new lesion.”

     We craned forward to peer at the screen. Our son ignored him, instead trying to pull the chair out from under the doctor with his foot. 

      “Or actually,” Dr. xxx continued, oblivious as he tapped the mouse and pulled up another image, “it’s a tiny, old one that’s grown.” He pointed at the MRI scan with his pen. “Right there.”

     This is bad news. My son’s head is riddled with brain lesions. As long as they sit and behave, as long as they act nice and quiet and don’t bleed, we can manage. And for several years now, they’ve done just that, been good little lesions. But even though my son has passed the teen years, his lesions are now rebelling.

     “It makes sense, the new seizure activity.” He shrugged. “A lesion like that could definitely cause irritation.”

     And it has, for now I’m irritated. Fourteen years have passed since my son’s first surgery. Fourteen years since the worst of the seizures, when he would wet his pants and fall to the ground. Fourteen years since they scooped out the lesion and part of his frontal lobe, leaving a burden no child should have to face.

     Our neurosurgeon had been telling us for years now that if we can only get our son through puberty (the most dangerous time for lesions) then they usually go quiet. The most precarious time was over; BBB is about to turn twenty-one in five months. We were there, we'd stumbled across the finish line, and now this had happened. The lesions have sucker-punched us. So yes, I’m irritated.

     “It’s not fair,” I whispered.

     Dr. Megerian shrugged again, leaning back in his chair and crossing him arms. “Just imagine how the cats feel.”

     

Happy Donut Day!!!!

Even though every day is Donut Day here at AS, National Donut Day is on the first Friday of June each year, succeeding the Donut Day event created by the Salvation Army in 1938 to honor the women who served donuts to soldiers during World War I. 

Bet you didn't know that.

So what does this mean?

And then...Eat a donut, or six, and show your patriotism!! It's your obligation as an American!!!

Go, go, go!!!

Angioma Alliance Zombie 5k Run for Research

I'm so dying to go to this.

*snicker*

Pun totally intended.

And shouldn't that be Shuffle for Brain...Research?



And here I was suffering thru zombie withdrawal, waiting for the Walking Dead to resume.



It looks like sign-ups/tickets for this themed fun charity run go on sale June 1, 2102. Check out the Facebook page here and event page here:

The zombies will rise on October 20, 2012! Be sure to register starting June 1st for our Zombie 5K Run for Research. We will be hosting our event in the Kensington Metro Parks of Milford, MI. 


Btw. If anyone goes. Photos. I'll want some. 

Family Conference in Canada!

Wish I was going.



I've been wanting to go to Canada since oh, forever. Besides, my friend Gillian is there. So it has to rock.

For more info or to register, check it out here:

Angioma Alliance Canada Family Conference

Saturday June 6, 2012

McMaster University in Hamilton, Ontario

One Foot in Front of the Other...

Some people are happy. Some aren't.

Some want to be even happier. Some are too happy.

Some think it's easy. Some think it's static. Some think it's earned. Some think it's elusive and find others who possess it annoying. And some who possess it are annoyed by those who are annoyed by them possessing it.

That's life, I suppose.

Personally, I've always believed in the hedonic treadmill theory. Or when I say believed, I mean when I first read about it, something clicked inside me. Yes, I thought, that's how it is for me.





Good things have happened to me. Bad things have happened to me. Very good things have happened to me. Very bad things have happened to me. My happiness has gone up and it's gone down, but never that far, and never that high. I always go back to pretty much where I was before.

And I'm not complaining. I think my before is a pretty happy place.

(Twenty bucks someone gets annoyed at that...)

But what most clicked was the idea that I didn't have to take blame or responsibility for it. Because sometimes people try and make you feel bad for feeling bad, or for feeling good, or for just feeling how you damn well feel. Do something to fix it, they seem to be saying.

Can't, says the hedonic treadmill theory. It would be pointless. I am the way I am, and you should accept me the way I am, because I do. And I kind of like that.

But then it's just a theory, and it could be completely full of crap. Still doesn't mean I don't kind of like it.

Anyway, you tell me: is your happiness a treadmill ride, or no?

New Partnership

Angioma Alliance has partnered with the Maryland Brain and Tissue Bank.  Thanks to this, brain donation at the end of one's life for cavernous angioma research will now be possible. 

From the Alliance website: To learn more about this program and how to enroll, please contact Amy Akers by email at amy.akers@angioma.org.

Research News

From the Angioma Alliance 2012 Spring newsletter:


Sporadic CCM: An Italian research group published a
study about the genetics of sporadic CCM. Sporadic CCM
is not caused by mutations in any of the CCM genes;
however, this group identified specific genetic variants that
are more likely to be found in people with sporadic CCM
than in the general population. (PMID: 22378217)

Conservative Management of CCM: Scottish
researcher and Angioma Alliance Scientific Advisory Board
member Rustam Al-Shahi Salman studied the untreated
clinical course of cerebral cavernous malformations. This
study looked at 139 individuals with at least one CCM who
did not undergo surgical treatment. The findings show that
within 5 years of experiencing a hemorrhage or
neurological symptom, the risk of experiencing a recurrent
symptom is higher than the risk of the initial
symptom. However, after 5 years, the risk of experiencing
additional symptoms begins to decline. (PMID: 22297119)

CCM3: While studying the function of the CCM3
protein, researchers in Spain identified that it plays an
important role in protecting cells from damage caused by
reactive oxygen species. Reactive oxygen species can
damage cells and may have a role in other common
diseases like heart disease and cancer. These molecules are
also neutralized by antioxidants; compounds found in
many foods including fruits and vegetables. (PMID: 
22291017)

To read more about these studies, please use the
pubmed.gov search engine and search for these papers by
their PMID number listed above

Where's the good in all this, someone asked...

I don't know.

Maybe there isn't any upside to dealing with this all.

I mean, I'm not an expert on this. I don't even have CCMs. I'm just the mom.

But I had a guest today. A visitor. An intake worker, from the regional agency, who wanted to know every detail of our lives. Every. Single. One.

BBB is turning 21 soon, and he'll be transferring to adult services. This is all part of how this bureaucratic crap rolls, apparently.

Anyway.

The thing is, we laughed. A lot. She was hilarious. A tiny, wisp of a woman, she had a wicked sense of humor and a bit of a trucker mouth. That makes her my favorite kind of person.

"I'm sorry to hear about your struggles," she finally said.

"Why," I asked. "Look, if this hadn't happened, I would have been a horrible person. Dealing with this stuff, it changes you. It tempers you. How can you be sorry about that?"

That's when she confided she had a heart condition. Her parents had been told she'd never survive to see her first birthday.

Surprise.

"I'm better for it, too," she said. "I help people, with my job and life. I have a purpose now. But more important, I know how damn beautiful life can be."

And I wouldn't have met her. I wouldn't have had this afternoon if this hadn't happened in our lives. And that's beautiful too.

I wouldn't have met my son's doctors or case manager or teachers, or so many of our friends. I wouldn't have gotten the chance to spend a weekend last winter learning how to snowmobile with Marie at Easter Seals, and I wouldn't have dared to stand in the middle of a frozen lake, listening to the ice cracking beneath my feet. And I wouldn't have appreciated how magical that moment, and life, was.

Because of this, so many people have come into my life, into my child's life, into my family's lives.

Because of this, I went back to my passion: writing. I built a new career, I signed with agents, I published books. I tried to make a difference, even if it was to entertain someone for a few hours.

Because of this, I picked a man, a good man, a man who stands beside me and fights with me, to marry that I might never have been smart enough to pick before.

Yeah, but where's the positive in all this, someone asked the other day.

Everywhere, I wanted to say. It's bizarre to think there's not some good that's come from all this. And I've been thinking about it a lot since.

Doesn't mean I wouldn't take it back, my son's diagnosis. Doesn't mean I wouldn't wave a magic wand and make my child healthy and whole. In a heartbeat, I would.

But I can't. And make no mistake: I don't believe for one second there's good inherent in any this. No. It doesn't work that way. There's no automatic positive side, no gift just plopped there when something awful happens to you.

It's up to you to give it meaning, though. It's up to you to decide to find the good and the purpose and allow it to change you. It's all up to you.

So, where's the good in all this? I still don't know. I'm just the mom, for pete's sake. But what I do know, all I know, is that I think you can find it. You just have to see it.

Fundraiser!!!

Lee's going to jump. June 16th. He needs you to help. $$ raised goes to Cavernoma Alliance UK.



Better Lee than me. *gulp*

Check it out here!

Clinical Study for Statin Drugs

The first clinical study on statins in patients is getting underway at the University of New Mexico. To learn more, esp about participating go to http://rarediseasesnetwork.epi.usf.edu/BVMC/studies/6205-CCM.htm

Also, maybe check out:

http://rarediseasesnetwork.epi.usf.edu/BVMC/studies/6201-CCM.htm

See more here for past info on statin research and check out the sidebar right over there...-->. Yep. Right there. 

Spring 2012 Newsletter is available!!!

Angioma Alliance's spring 2012 newsletter is up and ready! Go here. YES!

Sometimes, it's just about something more...

Transitions...Let me count the ways you annoy me...

I think, for me, one of the greatest frustrations is the variety of faces and stories you encounter in this angioma-dx'd world.

Young, old. Those who love those affected by angiomas, those who have angiomas. One angioma, more than they can count. Operable, not operable, partially operable, and the every joyful sort-of operable. No symptoms, a few deficits, to this really sucks. And I mean really sucks.

No one is quite in your situation. No one quite has the same issues.

It's frustrating.

Right now my world is all about transitions. And that's frustrating too.

As I type, my kitchen is what they fondly call a gut job that has, indeed, been completely gutted. Ditto the bathroom. Transition. Lots of hair being ripped out, and, yes,  most of it is mine.

As I type, spring is considering an appearance. Summer showed up last week with her eighty degree weather, but spring, she's being elusive today.  Some minds need to made up. Winter, spring, or summer, which is it going to be already? Transition. You're driving me insane.

As I type, I'm waiting on the local area service agency to call. Bob's Big Brother is turning 21 this fall. For children with disabilities this is a critical period. He's going to be transitioning from high school to adult services.

Of course, all this requires funding and knowledge of what services he needs and will qualify for, and lots and lots of meetings and paperwork. And phone calls. Lots of phone calls. I'm also going to add lots of phone calls that don't begin when they're supposed to because no one is ever on time for these things.

And while all this is going on, we're shuttling BBB back and forth to Children's Hospital. Issues, he's having them, and once again he's wired for an EEG and has gone into the MRI tube and we wait for answers.

But then that's the part of angiomas that isn't that discussed a lot for those of us who love those affected. The medical paperwork, applying for guardianship and SSI, and services and dealing with agencies, all while dealing with the health issues that just won't stop.

And of course the part about letting your children grow up and become independent adults. Or, well, as independent as they can be. It's hard to find others who are going through the same exact thing.

So. Yeah. Today I'm frustrated with transitions.  Doesn't mean life isn't good or it won't be less annoying tomorrow, and, sure, this is all fleeting. But it would be really nice if the sun would come out and my water worked...Just saying.

:)

2012 Angioma Alliance Patient & Family Conference

Yes!!

June 22-23, 2012 in Santa Fe, New Mexico. The conference is being co-hosted by Angioma Alliance and the University of New Mexico, Department of Neurology.

Check it out here.

Is it me, or do those pictures not make Santa Fe look like the quaintest place ever???

New Facebook Group for Parents & Kids

One thing you can never have enough of is support. I don't care who you are, or what you're dealing with. It's invaluable. And the best part of technology is that it opens up the world to you, esp when it comes to others facing the same issues you are dealing with...

Check out the new Facebook page Angioma Alliance for parents and children.

Road Trip!

 

If you've been reading the Angioma Alliance website/blog and newsletters, you know there was a big change this year. Connie Lee, the Alliance founder and President has transitioned to the role of Ambassador/Founder and a Program Coordinator position. 

What does this mean? Well, what I'm most excited about is that she and her twelve year old daughter Julia are launching a six-month road trip on January 21^st to raise awareness of the disease and encourage enrollment in the Patient Registry.


They're going to be heading to Boston come August. Holding my breath we'll get to meet up with them...ironically enough, we're supposed to be heading down south that month...ARGH. 


Meanwhile. Check out the registry and tissue bank here. Watch the road trip adventures here. And get the itinerary here.

Resolutions

Yeah, yeah, I know.

I like to keep mine simple and attainable. Like I will eat x amt of donuts this year.

Looking for some ideas of your own? Then check out this brilliant blog post Thirty Things To Stop Doing To Yourself. 

Gotta say I love the last one. Stop being ungrateful. Nice.

Happy New Year!!!

Another year over...and new one begun...

May your be happy and healthy. xoxoxo