Sunday, November 18, 2012

Hope in a Dewar

This weekend, we had an opportunity to visit and tour the CBR facility down in Tucson, Arizona.  We're big advocates for cord blood banking, and banked both Emerson and Zoe's cord blood.  By the time Zoe was born, we also chose to bank cord tissue (rich in the type of stem cells used to regenerate damaged heart tissue in adults suffering a heart attack.)  We asked a few of her treating physicians about banking; all informed us there was no stem cell therapy for HLHS at the time, but "who knows what we'll be able to do 10 years from now."  With that, how could we not bank?  Less than 3 years later, we're already seeing progress with HLHS and stem cell research. 

The girls weren't half as interested in touring the CBR facility as Caleb and I.  They couldn't care less that their stem cells were being stored in "dewars" containing liquid nitrogen, or that the backup generator for the entire facility was ginormous, or that the lab which processes all incoming stem cells was on the second floor, or that the cells inside the dewars have already given hope and life to hundreds of families.  Zoe made her disinterest abundantly clear during the near 45 minute tour. 

Thankfully, before the tour, we were able to get photographs of the girls in front of their "dewars" which stores their cord blood/tissue.

Emmy and Zoe sitting in front of Zoe's cord blood dewar

The girls, doing a bit of filming for CBR

Faux excitement about stem cells

Family photo in front of Zoe's cord tissue dewar

Good luck hug that we'll be able crack open dewar 49 someday

Roaming the halls and checking out the lab

During the tour, I was impressed with the wall of thanks - a wall with thousands of caregiver names, all of whom collected cord blood and/or tissue for banking with CBR.  I had to snap a shot of not just the wall...

But of the physician who collected Zoe's cord blood and tissue, Dr. Victor Zachian at the Children's Hospital of Philadelphia.  I sure hope Dr. Zachian's hard work on May 11, 2010, in pulling the cord blood and collecting a cord tissue sample, pays off down the road.

The area where the dewars are stored is quite impressive.  Each dewar holds over 8,000 samples - that's a whole lotta hope inside one dewar!

At the end of the tour, I caught a glimpse of Zoe staring at the dewars.  I hope she was willing medical advancements at that moment - so we can use her stem cells to someday strengthen that half a heart and keep it beating strong inside her tiny chest.

A glimpse - on the brink of stem cell therapy

Thursday, November 15, 2012

Totally Unacceptable...

Ok, so I realize it's been ridiculously long since I updated...  Things are a bit busy.  Far too busy.

I've come to the realization (with some help from others) that I tend to keep myself over-booked so that I don't have time to "think."  When there is quiet time, it's a bit scary.  In those quiet moments, I actually have time to turn around and stare the boogie-man in the face... HLHS.  When I'm busy advocating, working, volunteering, being mommy to two rambuncious girls, etc. I can fill my mind with "other" things.  It's much easier that way (or so it seems.)  It's been suggested that a concerted effort to breathe once in a while and face the realities of Zoe's heart defect might be a wise choice.  I have an uncanny gift of disassociation.

Don't get me wrong.  I'm faced with it every day (the scar taunting me when changing Zoe's clothes or giving her a bath, when holding her cool hands or seeing her blue fingernails) but those cues are easier to register tangentially than the realities of what those cues really mean.  With Zoe's next open heart surgery, a year or perhaps two years away, I like to forget.  Forgetting, however, doesn't assist in the grief process (which never really ends with HLHS families.)  Grief starts the day of diagnosis and continues throughout our entire lives.  It's hard work.  It's exhausting. 

So, I fill my day with "others."

One of my most favorite "others" is politics.  I'm so extremely relieved that President Obama won re-election.  It means a heck of a lot to our family, and so many families I've come to know and love.  Even the ones who don't realize (yet) how beneficial the next four years will be with Obama as our nation's leader.  I'm ecstatic, proud and so honored to have played a small role in the campaign.

The second best part about Obama's re-election: my conversation with Emerson the morning after Election Day. She asked many questions, particularly geared towards those who were "sad" about the election results.  It was so nice to have an opportunity to talk to Emerson, my four-year-old, about what it means to be respectful, humble, to live with humility, and talk to her about what it means to live in a democratic nation. I think the next four years will be a great learning experience for all of us, our children included.

Since I need to get back to busy, I'll leave you with photos from some of our "other" activities which keep us away from the boogie-man...

(Quality time with Uncle Bri)

(Enjoying Halloweening)
(Spending time in Northern AZ)
(Play dates - HLHS troublemakers on the right...)

(HLHS troublemakers on the laps!)
(Comparing the Giants)

(Attending the Congenital Heart Walk!)

(Raising lots of funds for CHD Research/Awareness!)