Elevated liver enzymes and ever so slightly elevated ceruloplasmin — what story are they trying to tell?
My adult special needs daughter had routine blood work come back with some wonky liver enzyme numbers in October that led to a trip to the ER then a referral to a gastroenterologist. He did more blood work and says he is concerned. He is referring us to a hematologist (who he refers to as a ‘cancer doctor’) for screening for leukemia and lymphoma, and to a “liver doctor” for evaluation for chronic liver disease. Molly has no pain, but also no appetite, unexplained bruises, and significant weight loss. (She wore size 12 four months ago and now size 8 is too big.) Many diagnostic tests to be scheduled in the coming weeks.
But, as I pause at this moment in our as-yet-to-unfold story, I realize that yes, something might turn out to be seriously wrong with Molly. Or, perhaps, something not so seriously wrong — something in her environment, or her diet, or her existing prescriptions — something we might be able to tweak to make the problem go away.
I feel compassion for all those who have ever received overwhelmingly scary news from doctors.
As I drove with Molly this morning to the hospital 30 miles away for one of the scheduled diagnostic tests this morning, she said, “Not exit 38. We want exit 39.” I thought of stories I’ve read of parents on vigil by their child’s hospital bed. And I knew that I was now “drilling down” into the underlying details of what those parents and those children’s experiences might have been like leading up to that moment: progressive familiarity with the route to the medical offices and hospital due to many repeat visits; hoping to find a close parking place in a crowded parking lot; knowing where and how to procure a cup of coffee in the medical office building; being grateful for the kindness and compassion of all those we meet during all aspects of the visits to the many healthcare providers we visit; and gratitude for the fact that we have medical insurance which enables us to proceed down this path of finding out what’s going on.
Our story is unfolding slowly. But it is gaining speed. We have been referred by one specialist to two other specialists, and they are hurrying to fit us in as soon as possible.
