One step at a time

Tonight, we celebrate the small victories because we are fully aware how important the little things are.

I get to keep my spleen for 6 more months. (And maybe even longer!)


The surgeon said that the hamartomas are there.  They are large, but they are stable.  Stable is a nice word.  So, because they are stable it implies they are benign.  This is another nice word.  The game becomes seeing if they remain stable.  So, in 6 months I will have another MRI.  If they have changed – it comes out.  If they haven’t we can continue to talk about keeping it.


Makes me wonder when keeping our organs became cause for celebration.

That is definitely in the “Post Cowden’s Syndrome” world.

You know I have wondered on and off how you actually “beat” Cowden’s.  Is it by coming through with the most organs still intact and cancer free?  This is such a strange, relentless disease.  It’s research, while still in its infancy is coming.  But,  I have to wonder how much more they will know a year, or 10 years from now.  And, whether I will like any of it.

We are waiting.  And we know that we are not alone.  We are waiting for Meghan’s results, and its nail biting, agonizing waiting.  But, Felix and I talked tonight and wondered what news would make us happy.  There was no easy answer.

please wait

See, last year – January actually – when we transferred the slides from her November 2011 biopsy to Sloan Kettering, the endocrinologist whose team reviewed the slides told us the cells were precancerous.  They had scored a 3 out of 5 on some scale they use.  He told us they would turn.  We just couldn’t predict when.

So, in June when he called and said he wasn’t thrilled with this nodule (one of many) on the left side we were anxious.  But he said, having reviewed her sonogram she could wait 6 more months to be scanned again.

So, here we are 6 months later.  Tomorrow will mark an agonizing 2 weeks since we went for this sonogram.  Waiting.  Worrying.  Wondering.

what if

When they tell you its “when,” not “if,” it changes things.  No matter what they tell us there will be an anxious, uneasy feeling attached.

This is the game with Cowden’s Syndrome.  It’s almost like a time warp.  A terrible cycle of wait, test, worry, results… Wait 6 months and repeat.


Six months seems to be all you really get.  Well, now what I have lost a few organs, I get a year on those follow ups.  But everything else is 6 months.  For both of us.

I tried to sync them up.  So that maybe the worry wouldn’t seem continuous.  But it hasn’t worked yet.

I try not to think too far ahead.  You know what Mom says about planning anyway.

I-plan-God-laughs And to think about this in constant 6 month cycles, well… forever.  It’s a little too much to manage sometimes.

So, we take it one day at a time.  Sometimes one hour.  Or, on this never ending road we call Cowden’s Syndrome – one step at a time.

neverending road

Ready or not!

Clocks (Photo credit: Leo Reynolds)

Time is a strange phenomenon.

It just doesn’t stop.  There are days we would like it to go slower, and days we would like it to go MUCH faster. 

There are days we would like to relive, and those we would gladly forget.   But really, we have no control at all.

60 seconds in a minute 

60 minutes in an hour 

24 hours in a day 

7 days in a week 

52 weeks in a year  

I find there are  occasions when I would like time to hurry up.  When I am waiting for my daughter to get out of surgery is the best example.  Time can’t go fast enough.  When I am waiting on pathology results, for any of us – it always seems like forever.

Hourglass (PSF)
Hourglass (PSF) (Photo credit: Wikipedia)

When we were first diagnosed with Cowden’s Syndrome in the fall, the first thing they did was send my daughter for a thyroid sonogram.  Of course it revealed 4 large nodules which we subsequently had biopsied at a hospital no better than a butcher shop. 

As we sought out another opinion, and moved the slides to a much more reputable facility,  an appointment in January found us with a pediatric endocrinologist who actually had some experience with Cowden’s.  He told us he had reviewed the slides and noted precancerous cells.  He essentially told us our daughter would have thyroid cancer at some point, he just could not say when.  So, he told us to return in 6 months, and we would check again. 

I remember at the time thinking 6 months was an eternity.  I wanted it to be faster.  I wanted reassurance that she was well.  He was insistent that 6 months was appropriate. 

So we made the appointment for June 14th. Now June 14th is tomorrow.  And I think I may need a little more time before I am ready. Things have changed.  Now we have an 8 year old with a developing body, and labs that don’t match.  Now the reality that there could be a malignancy on her thyroid, actually helping cause some of these problems is making me want to vomit. 

                                                                                                                                             If we could slow things down… just a little? English: A stopwatch is a hand-held timepiece ...

 15 hours from now we will be sitting for the thyroid sonogram, and 17 hours from now we will be discussing the results with the doctor.

 I am trying to prepare myself for whatever he has to say.  I have to hope for answers, for her sake. 

 Even if they aren’t the ones I want. Too many open questions.  Too much time had passed. 

Ready or not, here we come!

Motherly Worries

Her bloodwork was Saturday – the bloodowork to check the hormone levels.  Wednesday I will take her for a pelvic sonogram.  They are still trying to figure out who will do the breast sonogram.  Everyone is afraid.  No one knows what they are looking for.  Major NYC hospital, and everyone is afraid.  It doesn’t instill confidence.  When you have a rare disease, no one knows quite what to make of the realities that we face.  But this is my girl and I will not put my head in the sand.  Someone will do it.

She danced this weekend.  It was her second recital.  She will not dance on Broadway, but to her proud parents her smile was worth a million bucks.  Her ability to move – courtesy of PT and Celebrex, and her award winning smile.  For a few minutes on that stage, she was just like everyone else.  Sometimes its nice to be “normal.”

In a few minutes I will call to schedule the next MRI/MRA of the knee to check on the “leak” from the femoral artery causing her AVM.  We will do that the last week in June, just in case she needs more surgery, there will be time in July.

Of course all that depends on the hope that our June 14th appointment to check on the thyroid nodules is uneventful.  “They are precancerous.  They will turn.  We just don’t know when…”  At some point she will lose her thyroid to cancer.  And we can only wait.

Sometimes its good to be home.  To recover from surgery.  To make some phone calls.  Sometimes it just lets the worry fester.  I can accept that I have this damn disease… but why did it have to mess with my girl?  As a new internet friend eloquently said – eff you Cowden’s!