Passing time….

So here we sit.  Again.  For the second time post thyroidectomy, we are in the hospital. meg hospital May   The girl doesn’t feel well.  She just doesn’t.  End of story.  But, not too many people seem ready to listen until she’s in a full on physical crisis.  Even then sometimes the numbers are frighteningly low. Yesterday she knew.  She NEVER tells me to stay home from work.  She KNEW.  And my pediatrician heard it in my voice.  She was admitted soon after he saw her.  He wanted it to be the flu.  In some ways I did too.  A little Tamiflu and some rest.  Buts she’s negative for flu.  No real surprise.  Too simple a diagnosis for my girl. Since her surgery in February,  her TSH (Thyroid Stimulating Hormone) which is supposed to rest somewhere between 4. and 4.0 has been lingering well over 10, despite numerous medication adjustments. The TSH is supposed to be down regulated when the synthetic thyroid hormone takes the place of the T4 and T3.  Enough thyroid hormone and the TSH decreases.  Not enough and it increases causing hypo (under active) thyroid symptoms which can range from bone crushing fatigue, to generally feeling unwell and a whole host of issues in between. He medication has been adjusted upward with no effect – several times. I know it takes time.  I barely remember my own battle with thyroid hormones over 20 years ago.  The veterans of this surgery tell me 6 months, a year…  I get it.  I do. But then there is the reality of watching your kid feel crappy every day.  The reality of watching her FIGHT with all her might to do the normal things others take so easily for granted.  And then I get impatient. impatient smiley To complicate things it may not just be the thyroid hormones keeping us hopping. That “lymph node” turned “salivary gland” is now back to a lymph node in the neck.  We are awaiting the ultrasound that I feel should have been done with her appointment last Monday. And there is a fever.  She never gets fever.  Not really.  And yesterday it was 102.  Today around 100.  No answer why.  Not even the White Blood Cell Count gave a clear indicator. And the reflux.  Painful.  Like fire. Lack of desire to eat much of anything leads to weakness. fire And the throat clearing.  Reflux? or lymph node? or something totally different? So we temporarily stopped the celebrex to try to solve the GI issues.  The medical equivalent of robbing Peter to pay Paul.  The joint pain – managed for now – is rearing its head. And why does a 10-year-old, with no gall bladder and a week of the worst reflux of her life – with no dietary changes – begin vomiting bile? Maybe just maybe we will meet up with a decent GI.  Girls can hope. So I sit.  We sit.  Waiting for answers to questions.  Waiting for answers to more questions than we will ever get.  But we are hopeful.  Anxious. At least right this minute the worst part of being here is passing the time with the stupid IV.

They got it the second time!
They got it the second time!

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