Here. We. Go. Again.

This will be the year the surgeries outpace the age.  She’s been running a cool average of one a year for quite some time.  Now, at just about 10 and a half, she will get a jump start of her 11th surgery. February 13th. One week.

11-candles

That’s 11 surgeries.  Full on.  Operating room.  General anesthesia. Waiting for pathology.  Sometimes ICU.  Often staying overnight.  Real deal surgeries.

hospital

By my count we have been in 4 hospitals.  We have a system.  Felix goes into the OR.  I stay overnight.  It works for us.

system for surgery

Who has a “system” for surgery?

And that’s not the tests.  The MRIs that early on required general anesthesia, the three thyroid biopsies, the ultrasounds in countless places.  Nope.  Those have their own tally altogether.

My Grandma is 93.  She hasn’t had surgery yet.  Meghan thinks that’s weird.

That’s life with Cowden’s Syndrome.  Healing is “BEATINGCOWDENS.”

Surgery – the new normal.  Organ removal – the necessary means to avoid something worse.

I expected the surgical consult to be on the 6th.  Then my cell phone rang on the afternoon of the 4th.  It was confirming our appointment for the 5th.  The day it was going to snow, and ice and create horrendous road conditions.  And, if I couldn’t make it – it would be another month.

So, I spoke to my super understanding boss.  I rewrote my plans for a Weds. absence instead of Thursday, and after chopping anout 1/4 inch of ice off everything we left home at about 10:30 Weds. morning.

guardian angel

We have created quite an an army of guardian angels, and I called on every single one of them to guide our trip.  They were on point.  Not a hitch.  We were sitting in the waiting room hours before our appointment.

I got to develop the pit in my stomach as the young superheroes and their parents spent the afternoon on chemo pumps.  Pushing time.  The beautiful bald two year old in the blood room was a reminder to mind my blessings.

I had been under the impression I was coming to discuss IF surgery was a good option.  I had already decided I was unsure how I felt about whatever the poor pediatric surgeon at Memorial Sloan Kettering Cancer Center was going to be able to tell me.  But, I was a bit shocked when there really was no “if” in the room.

Her neck was examined.  Her notes reviewed.  I was reminded again of the failure rate of Fine Needle Aspirations for the thyroid.  (Close to 10% in case you wanted to know.)  I asked again what made her a good candidate for a complete thryoidectomy at 10.  The nodules. Consistent growth.  Vascular feed.  The tickle in the throat… It’s time they said.  It’s time.

nodule

I lost my thryoid at 20 in 1993 to a condition called “multinodular goiter” and “Hashimoto’s thyroiditis.”  They both stink.  But now I find myself wishing for such benign conditions to be the final result of the pathology we will receive 5 to 7 days post op.

Everything is moving faster here.  I don’t like it.  Not one bit.  I am a numbers person and these stats make me ill.

But, onward we go… because what choice do we have?

There will be work.  Follow ups.  Thyroid hormones to balance.  But we will figure it out.

She laughed today.  A lot.  Maybe she is relieved without the uncertainty.  She knew.  We all knew.

Saturday I will sign her up for her second year of CYO swimming.  The surgeon says only a week out of the pool.  And her scar should be half the size of mine.

never never give up

refuse to sink

Two days off of school   Then a vacation.  Kind of.  A “Stay-cation.”  Daddy will be home too.  Some movies, and maybe even some resting.  Maybe some healing for all of us.

She’ll be back in full effect.  Ready to rock “RARE DISEASE DAY 2014.”  Denim ribbons.  T-Shirts.  Movie night.

A denim cause ribbon, crafted after the Global Genes Project's slogan, "Hope it's in our Genes!"

A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”

A girl has to have SOMETHING to focus on.

6 thoughts on “Here. We. Go. Again.

  1. You, Miss Meg and Felix have my undying admiration! You are truly an amazing family! Love, prayers, my denim ribbon is out and ready!

  2. Best wishes to your daughter for a good recovery. I will be thinking of her. A strategy which helped a friend’s young daughter through some difficult hospital treatments was creative visualisation. It is something I have used post-surgery to deal with pain, as I do not tolerate pain medication well. I have also used it to reduce students’ anxiety. I used audio tapes, but there are websites which offer scripts, which you could adapt for your child: http://www.themindfulword.org/2012/guided-imagery-scripts-children-anxiety-stress/

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