Thursday, June 30, 2011

June 30, 2011: Celebrate.


There is a scene in the movie, "Enemy at the Gates" where a squad of Russian snipers are celebrating with song and drink after dinner underground during the brutal battle of Stalingrad.  They partied every night, because they knew that, for some, the following day would be their last.  It is a poignant scene.  Men and women choosing to celebrate life, not knowing if it were their last chance or not.  There is an undercurrent of misery among the festivities, as if the 900 pound gorilla of war was standing on top of them all, but they celebrated nonetheless.

3 EB babies passed away this week.  One year ago today, Bella was coughing up esophageal tissue and choking on her mucus.  Vomit and diarrhea were non-stop.  It is as if we are at war.  War with EB, and it is still winning.

HOWEVER, despite the tragic casualties this week, there are victories as well.  And for these victories, it is cause to celebrate.

Most of you know baby Daylon - Bella's boyfriend?  He just celebrated his DAY +365 since transplant this past week, and tomorrow, we celebrate his 2nd birthday party.

Folks, there wasn't going to be a 2nd birthday party, and it was a miracle he even celebrated a first birthday party.  As Dr. McGrath said while Daylon was roughly Day +20 or so, his body was shutting down as they went into transplant, and he had very little time left.  My goodness, he and his amazing family have been through SO MUCH this past year, but you know what?

He's still here, and since his most recent trip to MN, he's getting better every day.

GOD be praised, because just about every doctor along the way (except his docs in MN, Dr. Wagner and especially Dr. Tolar) has written Daylon off.  I can't even begin to imagine the statistical odds against Daylon surviving all that he has (read his mommy's most recent blog entry HERE for a recap), but he has, and no doctor can scientifically explain why.

Kinda like they can't scientifically explain God... ;-)

Sometimes, God just has to pull rank in order for us to have a chance to learn and grow.  Sometimes, we aren't able to see the lesson as we are learning it... that's why we are called his CHILDREN.  We expect no less of our own children, do we?  We cause and create circumstances and situations for OUR children to learn and grow from, even if they don't understand it at the time, and if we really are created in God's image, why would it be any different?

Despite the PANGS of regret I feel from Bella's death when I see a comment from an adult with RDEB on an article somewhere, I choose to CELEBRATE Daylon's life instead.  I CELEBRATE Charlie.  I CELEBRATE Payton.  I CELEBRATE Sam.  I CELEBRATE Keric.  I celebrate all these courageous kids and their parents who have walked into the valley of death and come out the other side transformed.  These first generation of EB BMT patients are changing medical history.  It has been a war for each of them... a war with EB AND BMT, but they have persevered and are sowing the seeds of hope for all families with JEB and RDEB kids.  It is still the dark ages of EB BMT for sure, but there is hope.  There is progress.  There is success.  5 years ago, there was NONE. 4 years ago, there was NONE.  Thanks to the courage, perseverance, and tenacity of Theresa Liao (the mom of patient #1 who single handedly sought out and charged Dr. Wagner with saving her son), there is now 3 years of research data, and a half dozen kids with simply miraculous outcomes.

Granted, it hasn't exactly been a perfect game.  There has been much loss along the way, but that is unfortunately the way of all things.  Like the Russian soldiers, every set of parents knew there was a chance their child would not come home from this new procedure, or that it just wouldn't work at all.  We just all hoped it wouldn't be us.  We were genuinely scared for ourselves, but we were genuinely scared for each other as well.  At one point last summer, there were 5 families in the hospital in MN with EB BMT kids.  2 of us didn't come home with our kids, but even while our kids were fighting for their lives, we worried and prayed for the other children and their parents just as much.

Someday, there will be 5 families at the hospital with EB BMT kids, but all 5 families WILL return home with their kids.  Someone HAS to make this declaration first in order for it to move from thought, to word, to action, to deed.  Someone has to be bold and brash and just say it will be so, no matter what.

Might as well be us.

Celebrate.  Tomorrow doesn't necessarily follow today.  None of us were even guaranteed today to begin with, so since we have it, celebrate it.

God night.

Here are a few pictures my friend Lynne took when we first got to the cabin on her camera.  It was 55 degrees and windy, which explains why I am bundled up immediately after getting out of the water with two ears that felt like they were about to fall off... but hey, we only had one day there, so.... celebrate we did!


  1. Thank you.


  2. Beautifully written as always Tim! What a great reminder for all of us :)
    Love the pics and LOVE you guys! Hope to see you all soon.
    The Vanderbooms