In our house, there are heros and there are HEROES.

Everyone knows heroes..not everyone is lucky enough to know any HEROES.

· Batman “To the batcave, Robin!”

· Buzz Lightyear “To infinity! AND BEYOND!”

· Optimus Prime “Autobots. ROLL OUT!”

· GI Joe “Gooooooo Joes!”

· Spiderman “With great power comes great responsibility.”

All heroes, not a one a HERO…

When asked who their favorite hero is, my kids are keenly aware of the difference between the two.

Charlie puts it best “Real people HEROES, or like, made up, pretend heroes?”

Real people HEROES, Charlie. Actual people, who have changed the world in a positive way by their actions or beliefs.

And that’s brings us to the thoughts that weigh heavy on my mind this last week.

Our family has been deeply, directly affected by one of those “real people HEROES” and at 42 years young, Mark has left our earthly lives, to carry on his cape wearing heroics in heaven.

And I don’t know how to tell Kylie.

You see… he IS why she IS.

Yes, I can express this all publically without fear that Kylie will come across it simply because she is a normal teenager who is more interested in Justin Biebers’ shirtless activities and who all is going ice skating this weekend and has absolutely no effing desire to know what goes on in her mothers mind and could really give a shit less what she posts on her blog.

So, its cool.. we’re safe…

And THAT is a direct result of Marks actions.

Rewind almost 10 years, December 2003. Kylie was in Long Island. Bone marrow unit. 24+ hours into transplant when her first dose of Busulphan (chemo) sent her liver enzymes into the stratosphere.

I remember being taken into a tiny “parents lounge” off the unit. Being told big words. All medically fancified words. I remember the words like “heavy EBV load” “veno-occlusive disease” ”excessive liver iron overload” “guaranteed fatal” and “because of this complication, transplant is no longer an option for Kylie”. And for those of you who are unaware of the 2003 version of Kylie, those words started the countdown to our days left on earth with our daughter. Kylie’s disease was so complex that without transplant, she was not going to live much longer. And we all knew it. I cried for a few weeks, researched Epstein-Barr virus and transplant, and even –gasp- called OTHER transplant doctors. Needless to say I was TOTALLY bitch slapped via telephone by Kylie’s doctors in Long Island. And deservedly so. They begged me to calm down. That they said they should be the ONLY team that transplants her should the opportunity ever come. To take a deep breath and to trust them. They told me there was potential on the horizon-

· Boston.

· Experimental transplant.

· A man in his 30s with similar liver issues to Kylies.

· Decreased chemo, increased t-cell depletion.

· Mini transplant (that is FAR from mini).

· Hope.

As we attempted to get the sympathetic release of the new chelation medication (simply put- it removes iron from transfused patients) being developed by Novartis, we also kept close tabs on the folks in Boston. The family, endlessly gracious in their love for others with DBA, were more than willing to help us. In fact, they were inspired by our desperate NEED for Marks help, even if just by example only. But they went beyond that. They encouraged us in our struggle. Shared their Doctors information with me who I called on MANY occasions and exchanged tome length emails for months leading up to and through Kylies transplant. They shared their disappointment when we were denied the sympathetic release of the new, up and coming “miracle chelator”. (thankfully so… as her liver would have probably TOTALLY crapped out had we tried it)

They shared with us every milestone in his transplant. The good, the bad and the indifferent. They opened their journey to us knowing it could potentially save our daughter. And although initially, my only contact was with Mom, Maddie and the worlds most amazing and epic sister ever, Chris, eventually Mark couldn’t resist the cuteness that is Kylie Jae and a year after her transplant they met for the first time. The bond was obvious. The connection, unspoken.

(more on the WHOLE family later, today is all about Mark.. and Kylie…)

It was summer 2006, Camp Sunshine, Lake Sebago, Maine and I was SUPPOSED to be paying attention to a very famous doctor (in our world, we have famous doctors who we send fan mail and practically act like groupies around. A sub-set to the real person HEROES lists we keep) who was vehemently explaining to my husband and I why we should NEVER give Kylie growth hormones. I SHOULD have been taking notes, hell, I probably should have been video taping it, as having this doctors private, direct attention is a miracle in its own right, but instead I watched Mark, watch Kylie… and I could see his pride.

Kylie, oblivious. Mark, silent. Me, grateful.

I could FEEL his joy even if his words were few.

The family bravely went where no other had gone before. Mark single handedly changed my world. In his life, he broke boundaries that had been placed on people that were too medically compromised to survive a traditional transplant. And in his death, he broke the hearts of every single person who’s life he has unwittingly touched.

With every success and yes, even failure, that Kylie experiences, we feel Marks hands upon us. With every school dance we never thought she would go to, every pick up and drop off of a gaggle of chatty teenagers at the mall that I never imagined Kylie would be a part of, boyfriends and broken hearts I never dared to imagine until after Mark made it all a possibility for us. For her.

So, thank you Mark. For your struggle. For your smile. For your bravery and for your courage. I know you refused responsibility, but you’re stuck with it buddy… you are OUR hero. And like Charlie puts it..,

A real people HERO, not like, a made up, pretend hero…

RWE

 

Obituary and tributes to our hero can be seen here:

http://www.legacy.com/guestbook/dignitymemorial/guestbook.aspx?n=mark-lapierre&pid=163716396&page=1

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