Tuesday, January 24, 2017

Shaking it up

With a bit of time on my hands, while Brent naps, I thought that I would write something.  I found several empty, untitled drafts from the past two months.  I vaguely remember sitting down, but not knowing how exactly to describe what our family was doing.

In November, we successfully grafted skin from Alex and covered the large wound on Brent's back, something that has never been done before.  Alex took time from his studies at the University of Michigan to do what he was uniquely able to for his brother.  I am proud of his generosity to Brent and of the man that Alex is becoming.

While the graft has been a raging success, Brent has since developed painful lymphedema, GVHD and open wounds on his legs that have required a great deal of attention and care.  It was isolating, exhausting and discouraging for all of us, in ways that are difficult to put into words. Seeing your child in pain, unable to alleviate it, is incredibly difficult.  Causing the pain, even as we were caring for these wounds, was even harder.

Whenever I despaired, which was often, I would mentally point with gratitude to the things that were working: the absence of cancer and the success of the skin graft. I struggled this fall, trying to balance gratitude and grief. I was paralyzed emotionally, and physically weary from tending to Brent's medical requirements, discouraged without seeing progress or an end to his suffering.

I thought that I would shake things up in the new year by committing to a 100 mile bike ride that will take place in June.  The event raises funds to support immunotherapy research via Cancer Research Institute.  I registered for the race and began to train, believing that this would be good for me--mind, body and soul-- as well as benefit cancer patients like my children.

Brent's idea of shaking it up in 2017 was developing septic pneumonia, and enduring a five day stint in the PICU.

I write today from his hospital room, beginning our third week here.  My sincere hope is that we have checked the box for 'life threatening episode,' for 2017, a habit that is alarming on its own, but especially in the way that it has become routine for us.

Brent is improving slowly and we hope to return home sometime this week.

We welcome your prayers for the RamerNation, and if you were inclined, your support for Cancer Research Institute.

1 comment:

  1. I'm so sorry you never get a break. A worry free period! If anyone deserves it, you do! I hope you get a little soon. I know we never stop worrying but a little boring would be good, right?! 🙂