Saturday, July 30, 2016

Today is not that day.

A few weeks ago, I contemplated some time of my own, relishing in the luxury of how I might spend it.  I have a friend who frequently mentions that this sort of activity might anger the cancer gods.  I don't believe that life works this way, although I might have to give greater consideration to this notion. You can decide for yourself.

We are not, most gratefully, busy with cancer at the moment, but rather, cancer's aftermath.  

I worry that I might be developing a credibility problem.  If you google Li-Fraumeni, our rare inherited cancer predisposition syndrome, you will find an explanation for the six uncommon cancers in my children. If you search "necrotizing fasciitis," you might conclude that we are branching out from cancer, but in a no less devastating or dangerous way.  If you do not know our family, you might not believe me at all. 

Brent has spent the past two weeks in the hospital with a stunningly aggressive infection: a flesh eating bacteria. Four of these days were spent in the pediatric intensive care unit, three sedated and on a vent as they managed his septic shock.  Shock, would be the most appropriate word in that sentence.  He had six surgical interventions to remove necrotic tissue on his back and he faces several more in the coming months of healing.  

It is surreal, even typing these words out.

Whenever we have faced daunting odds with a cancer diagnosis, invariably someone will helpfully point out that death by cancer is not assured.  We might just as easily get hit by a bus.  For the record, I have never found this to be terribly comforting. If you find that you must support someone with cancer in this vein, I would add "or flesh eating bacteria" to the bus comment. 

The most helpful bit of encouragement that I ever received, came nearly five years ago from my sister.  As I despaired about our genetics, and the osteogenic tumor that encompassed Brent's entire right pelvis, my fear overwhelmed me.  Laurie was everything that I needed in that moment, acknowledging my fear as justified. "It is possible that all of the things that you fear may happen. It is possible that your children may die. But today is not that day."

I cannot say how many times I found the strength to tamp down my fears as worrisome things happened with these words "Maybe... But today is not that day."  I found a way to live, and to laugh, and to love.

However, in the interested of balance, I should also mention that I cannot count how many times in the past five years that I prayed "Dear God, please help me, because today very well could be that day."  Thursday, July 14th can be added to this tally.  

As they wheeled Brent out of the PICU to the OR, I despaired in a room littered with medical debris from hours of efforts.  Dan turned to me and firmly said, "This is only another chapter in the book." My husband is a rock, full of faith, in my moments of doubt.

As Brent's health progressed last week, our family resorted to humor. We told Brent of the things that transpired while he was so very ill and sedated. Upon learning that he had flesh eating disease, Brent quipped that this was nearly as cool as Lauren's proposed scorpion venom trial, something worthy of a zombie apocalypse.  Alex had offered his own skin if a matched graft for Brent would be a better option. (I am so proud of him for offering his brother a pound of flesh, in addition to bone marrow) There was much joking about how hairy Brent's back would be with Alex's skin attached. I am a firm believer in whatever gets you through. We are going to laugh as much as we can, and fairly inappropriately, or so it would seem.  

We are blessedly home, but many medical issues remain. Equally challenging, I am left wondering how to thank the legions of people at Rainbow Babies and Children's Hospital who have cared for us. I have felt this way before, once with Brent's orthopedic surgeon at Sloan Kettering. I struggled to find words that were adequate in expressing our gratitude for his help, saving both Brent's leg and his life. Dr. Healey, full of grace, simply asked that we go and lead a full and happy life, using our talents to make the world a better place.  

Well, then.

Despite my ardent wish, The RamerNation has yet to find a bit of 'boring,' the term we use for medical quiet. But beauty is evident in all of the unexpected places that we find ourselves.  Our experience has been extraordinary by every medical measure, and by virtue of the folks who have crossed our path. 

I am so grateful for every day of our life together, trials included.


  1. Amazing people! Your family and the staff you describe! Thank you for sharing.

    1. Thanks, Matt. We are surrounded by so many kind people. both on hospital days and on regular days.

  2. I am so glad that things are looking up. I've been praying for you guys... I am the same way.. we try to see the humor in everything!!! Hang in there... we will be praying for boring.... lots and lots of boring!!!

    1. We are so grateful for prayer--I can feel the calm of it wash over me at the most unlikely times.

  3. Continuing to pray for all of you. If it's boring you want, it's boring you deserve! What strength you have to endure these challenges ... Lots of Love, Melissa

    1. Thank you, Melissa. With any luck we will have social things rather than medical obligations filling our calendar soon.