April 20, 2013

Fade to Black

If you read yesterday’s post, then you know that 04/19-4/21 of 2008 goes down as one of the single most incredible, most difficult, and most terrifying weekends I have ever walked through in my 42 years on the planet. It’s mind-boggling to me that my lived experience as a child with cancer pales in comparison to the failure of my heart as a late effect of the cancer treatment given 3 decades prior, and ultimately saving my life.

04/20/2008:

Having arrived at the Cleveland Clinic just 24 hours prior, I somehow managed to live through the night and quite miraculously, I was still breathing without the support of a ventilator. Our morning brought a deluge of information; so much to take in, yet so little time to make decisions as my condition was deteriorating at break-necking speed with death in relentless pursuit of me, my heart, my life.

THIS day, a Sunday, was a crucible unlike any other with my life hanging in the balance.

The options presented to us:

  1. Support me as I died which would likely be within a few hours
  2. List me with UNOS [the United Network for Organ Sharing] as a Status IA in CRITICAL NEED, then place me into a medically-induced coma with Venous-Arterial Extracorporeal Membrane Oxygenation [ECMO] support allowing my heart and lungs to rest; ECMO support, however, was a time limited support and  [it] would be withdrawn in 2 weeks if a matched heart was not found

The medical and surgical teams charged with my care had no formal recommendations; they simply said they would move forward with whatever decision we made.

Although eligible for transplant, I was considered extremely high risk and a very poor surgical candidate. That being said, I possessed a fierce unwillingness to give up, thus we decided to press on towards transplant despite the unlikelihood of a donor heart becoming available.

When your days have been numbered to as few as two weeks, final goodbyes are a necessary as means to lay the foundation for healing should the unspeakable become a reality. I still wonder just how I said goodbye to my husband of 13 years; our son, only 11 days into being 5 years old, and my dad of the entirety of my life?

Truth is, I don’t know, but I am told that I did; our final goodbyes remain sacred exchanges, set apart as private, held close among us.  

With that I will close out this day, 04/20/2013 with a heart full of gratitude knowing that never once, not even in the depth of the darkness of a coma, did I ever walk alone…

Thanks to each of you reading for allowing me to share my recollections and the accounts that others have shared with me each regarding these days 5 years ago. There is great purpose in the sharing of these moments: HONOR, HOPE, HEALING, and ACTION.

FACT: 90% of Americans say they support organ donation, yet only 30% know what steps to take to become an organ donor.

If you are not already registered as an organ donor, would you ACT on your expressed support of organ donation by becoming a registered organ donor as www.donatelife.net or via Facebook under life event in honor of donors and their families remembering that everyone is a potential organ donor and everyday is a beautiful day to donate life.

Finally, MHYH is bringing the story of late effects of cancer treatment before the survivor population that we may be educated and equipped to maximize the all coveted cure.

 

 

 

 

 

 

2 Comments

  1. Judy Bode

    April 21, 2013 at 10:59 am — Reply

    Remembering with you Steph,
    Judy

    • mhyh

      April 22, 2013 at 1:24 pm — Reply

      Thanks for standing with me, Kindred!

      Love
      Steph

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