May 26, 2011: Ride the Wave...

Heaveno!

Well, things are continuing "all ahead FULL" around here in PUCK - West Headquarters. No sooner than we pack up most of our supplies from Bella's Bash on Saturday, we had another fundraiser tonight! LOL. We had the first of four local restaurant fundraiser nights over the next four weeks. Tonight, was Wahoo's, a long-time favorite of Angelique's and mine.  Sorry I didn't post the flyer up here; I get a big fat F on that one.  I'll post the next 3 flyers at the beginning of the week on my Monday night post so if you live locally, you can come out and support PUCK by eating at a fun, family-friendly restaurant!  Thank you to those of you that made it out to Wahoo's tonight.  We realized just how easy restaurant fundraisers are; just show up, give 'em your flyer, stuff yer face, and 15-20% of your tab goes to PUCK.  How easy is that?  Having gone for lunch AND dinner today, I am FULL of salsa, though!  (I'll be reaching for the TUMS by 1am, I predict).

PUCK has undergone some serious organizing this week as well!  We actually created our first Org chart, and really fleshed out all the different categories of accountability and now everyone involved (currently Lonni and Jay Mooreland - PUCK's founders -, and Ang and me) gets to write out what their roles and responsibilities will be.  By this time next month, we'll have a 3 year strategic plan written out! This feels really empowering, and just taking this first step of organizing has already shifted how we think about our goal.  We feel so much more confident that we can accomplish our vision that "ten years from now, there are multiple treatment options for kids with EB, and no child ever has to die from this disease again."

There are so many worthy causes to be a part of, and quite frankly I'd like to be a part of several, but I feel like EB chose us, and now that we are forever a part of the EB family, this is the place to start.  We each have so many different gifts and passions, it's what makes our world so full, rich, diverse, and complex.  EB might not seem like the broadest "problem" to take on, but we know in our hearts how science and research works:  when you crack the code of one disease or treatment, it most often leads to much broader applications.  This is the way with most pharmaceutical drugs, therapies, and treatment protocol.  We feel like if Dr. Tolar can truly be given a chance in his lab to take this current treatment to the next THREE levels he sees possible, it will not only be the end of bone marrow transplant as we know it (invasive, risky, life threatening), but the potential beginning of a whole new realm of treatment possibilities.

I played soccer on Sunday for the first time in a year.  I scraped the skin off my right elbow for the four millionth time.  Then it hit me.  I am an EB carrier.  I have half the anchoring velcro in my skin as anyone else on that field.  I have been dealing with blisters on my toes, skin peeling of my knees, and off my right elbow my entire adult life.  I mean, all.the.time. when I play.   I put this Benedryl product on my arm ( a topical ALCOHOL based product to minimize itching and pain) on Monday and couldn't believe how much it stung.  I mean STUNG.  If it had been Ali, she would have started screaming.  If it had been Bella, she probably would have started yelling at me.  Then, I remembered the time I accidentally poured rubbing alcohol over her entire open wound that was her knee rather than saline.... don't put your alcohol and saline bottles near each other by the way.  Man, did she scream like I had never heard.  I can't imagine life inside an EB body.  The baseline of pain signals pouring into the brain all the time, day after day.  I remember the life of being an EB parent.  The baseline of stress and anxiety signals pouring into the brain all the time, dad after day.  I think a life worth living is one where on my tiny block of the universe, a particular experience gets transformed for all subsequent kids and parents.  There are plenty of other diseases in the world; I'm not all pollyanna.  However, crossing THIS particular one of the incurable list would be pretty cool.  Bella will smile and say, "Good job, daddy." and I'll get to say, "None of your journey was in vein, honey."  As a parent, that would be job well done to me.

Moving right along...

Please take a minute to click over to our TEAM BELLA! page.  There, you can read about some world class HEROES who took our challenge to raise some funds in their own communities, and see who WON our Team Bella Challenge!  Someone just got an iPad mailed to them, and someone else got a flip video!  These are tiny tokens from Ang and me to say THANK YOU THANK YOU THANK YOU for not just reading, but taking action and getting out into the community and sharing about EB.  We are grateful for our Team Bella, and would love ANYONE who feels moved to action to join!  Just email Ang at Angelique@puckfund.org and say, "I'm IN!" and she'll begin to work with you on just how you can make a difference as well.

Last but NOT least...

If you aren't already familiar with the EXTRAORDINARY story of the Cannell family, please jump over to Courtney Roth's blog.  Courtney has done a GREAT job of laying out there story in a clear and concise way.  Read her post, and take whatever action you feel moved to take.  I know we EB parents often ask a lot of our readers, and sometimes it feels like I'm beating the drum endlessly about donating money.  We are passionate about sharing these stories of inspiration with the world.  There is plenty of hate, misery and fear peddled daily in the mainstream media, BUT the blogosphere allows us to write a different story line.  One of hope, community, love, and action.  To me, that is a healthier diet of information to digest.  Thank you in advance for your partnership in supporting the Cannells.  Thank you for still being here with us on our journey as well.

God bless you, and God night.

Ali at her Kindergarten Open House last night...

Ali and Bella at California Adventure together for the last time...