State of Mind – Part 2

There is something about sitting in a room full of pediatric cancer patients that numbs you, amazes you, and astounds you all at the same time.

There was a time when the little superheroes, the miracles walking around us, and the significance of it all may have gotten past Meghan.

superheroes

She is older now.  More weathered at 10 than she should be.  She misses nothing.  And to a child who has heard the word “cancer” spoken to her, around her, and beside her, her entire young life, she is acutely aware of its presence in the world.

With Cowden’s Syndrome comes cancer conversations.  Is a little fancier when you describe a “PTEN mutation, as causing benign and malignant tumor growth,” but the meaning is the same.

Anyone can get cancer.  At any time.  And certainly it’s almost unlikely that any of the children we saw today have our “Cowden’s Syndrome”

However since Cowden’s Syndrome, and cancer become so closely married – it is hard to consider one without the other, and days like today are especially draining on both of us.

We left the house at 8AM, and sat in traffic before arriving at our destination, (a route Google Maps tells me is 20.5 miles)at 9:40 – 10 minutes late for our appointment.  We then sat a good deal more, until almost 10:40, with plenty (read way too much) time to observe.

The facility is clean, and neat and tries to be festive.  Children were celebrating Cinco de Mao among chemo pumps, bald heads and IVs.  I watch and try to think nothing.  Because it is fortunately IMPOSSIBLE for me to know how they feel, or what they are going through.  But, an adjacent conversation involving a thin, beautiful, bald 5th grade girl and her dress for the dance was difficult to avoid completely.

We were met with the familiar and friendly surgeon who wasted little time before examining Meghan’s neck.  He felt and thought and asked questions.  “Has she been sick, any fever, trouble eating…?

“No, no, no.”

“Well, I don’t think there is a problem.  I think it is probably OK.  But just to be sure we’ll have you come back in 2 weeks.  If it’s not gone we will scan it then.  Oh, and you should see why her salivary gland is enlarged.  It’s not just the lymph node.”

“With whom would I check that?  Because for 6 months I have been talking about incessant throat clearing and all I get are theories.  The last ENT told me to see a GI.  Have you ever heard them laugh when you bring in a 5 foot 2 100 pound 10-year-old?  I have.  Any suggestions?”

Silence.

“Ok then, we will get you set up with an appointment 2 weeks from today.”

I had come in hoping for an all clear, or perhaps a 3 month review.  2 weeks had its pros and cons, and Meghan and I weighed them, silently and independently as we headed back to the elevator.

We arrived home at 12:20.  Four and a half hours.  Insanity.

This afternoon I was stressed.  Over nonsense.  When I am anxious I have an incredible need to control nonsense.  I have been stressed a lot.  I need a new outlet.  This one is making me not so much fun to be around.

I heard myself today.  My tone, my body language.  All so negative.  Not like me, and not the person I strive to be.

I was brought back on track by my own superhero.  Only the strongest can share what’s on their mind and in their heart.  That’s why I love her so.

hawkgirl

Wise beyond her years.  Worried about things she should never even have to think about.  Yet still able to find the simple beauty in the world around her.

I took a “time out” tonight to regroup.  She nestled up with Daddy.  Warms my heart to see her in my bed.

My nighttime prayers include the many who had their own medical adventures today, and my girl.  That she may know the joys of childhood… and for me, that I will remember to enjoy watching before they pass me by.

childlike wonder

 

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