This Matters

A few weeks ago, as we were preparing for World Rare Disease Day, my principal allowed Meghan to speak to my school.  She did an assembly for the entire school, first grades 3-5 and then grades K-2.

In both assemblies she showed her video, although we clipped the beginning from the little guys.

In both assemblies she spoke about Cowden’s Syndrome, following her mission to raise awareness.

Our Student Council actively worked to collect denim as part of a fundraiser for the mission.  They were amazing.

One little girl, our first grade friend Emma shared her journal with Meghan.



Meghan and Emma
                                                     Meghan and Emma

Then she shared the journal with the whole school.  We are so proud of Emma and thankful for her bravery.  It felt really good to know the mission of awareness was working, coupled with intelligent compassion as young as first grade!

We had the fundraiser on the 21st of February.  The $13,000 has been dispersed, but the lessons remain.

Children in my hallways ask about “Meghan” as if she is one of them.  They want to know how she is, and what she’s up to.  A few even ask when she is coming back.  These are the young, bright eyed reasons I love my job.

Plus one more

About 2 weeks ago a young lady sought me out to give this to me.  This was a labor for her, truly a labor of love.  Writing is not easy, but clearly compassion is a natural emotion for her.




We are getting somewhere.  Meghan wants the world to know.  With promising children like this on her side, she’s developing the advocates young.

With much love and gratitude, we remain



In honor of the last day of September – Childhood Cancer Awareness month, I am re blogging my own post from January of this year.


I saw superheroes today.  Not the kind that normally come to mind.


The 9th floor of Memorial Sloan Kettering Cancer Center was absolutely crawling with them.

None of them had capes.  And they weren’t any funny colors.

None of them could fly, and yet I am sure that’s what they were.

I saw young bald superheroes with smiles that could light any room.

I saw older, more mature superheroes, heroically managing their IV poles, after teaching a younger one not to cry.

I saw parent superheroes, who although their capes were invisible to the naked eye, possessed nerves of steel, and the ability to make their young one laugh even as they themselves were inches from despair.

I had a lot of time to watch them.  We had a long wait this morning.  And even as I kept Meghan distracted, my eyes never left them.

They navigated the floor like…

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It was NOT the Cowden’s… this time!

Insert HUGE sigh of relief here.

happy girl

We saw the retina specialist.  He was a young guy.  He took a medical history.  He had never heard of Cowden’s Syndrome so he took 15 minutes to read and familiarize himself with it so we could have an intelligent conversation BEFORE the exam. (This is where all my fellow Cowden’s sufferers stop in amazement… yes – imagine that!)

He understood my concerns, especially the vascular ones since the eye doctor saw “something” on the picture of the eye.

Even with her having said, “It’s Probably Nothing, but…,” he still took almost 1 hour start to finish on the exam.

He looked in her eye.  He photographed the eye.  He tested her eye pressure, and her vision with and without glasses.  He systematically eliminated cause for concern, until he was able to say – yes, her vision declined – but I don’t see any ominous reason why that happened.

There is NO evidence of vascular lesion.  There is NOTHING to indicate that Cowden’s Syndrome played any part in this one.  Instead, it’s a bit of “cat and mouse.”  This time we are chasing a different set of genetics.


Unfortunately for Meghan, her father’s family doesn’t carry good eyesight.  Seems she got the PTEN mutation from me, and the rotten eyesight from them.  Share, Share..,  I am not happy about the poor eyesight, but it is a lot more straightforward and less messy than anything Cowden’s related.


Rare diseases.

Over suffered, and under researched.  All of them.


Spoke to a Mom, a volunteer at the Global Genes Project.

She was lovely.

She also has twin 9-year-old girls with a rare disease, whose chances of long-term survival are bleak.

The kind of conversation you end wow-ing the other person’s strength, and being thankful for drawing the rare disease card you did.

And this week I am being reminded that your kid doesn’t need a rare disease to end up in dire straights.  Young children are snatched from their parents far too soon.  In ways that just don’t make sense.

So we pray.  A lot.

Can't stop thinking cartoon

We can’t fix everything.  As a matter of fact we can’t fix most things.  So we hope.  And we help.  The best way we can.

We will make lots more ribbons.  People need to know about these disorders.  All of them.  And once they know, they will help.

Rare_Disease_Day_Logo_2011-1024x968 2

We contacted the paper in hoped they will run a story.  Every day feels like a story unto itself.

This time it wasn’t the Cowden’s.  Thank God.

But there will be a next time.  The worry will never cease.

Hold your children tightly.  To a large extent we are lucky.  We seem to know the beast we are fighting.

Tell them you love them.  All the time.

We are going to Disney again.  Money well spent.

Don’t look too closely at the backyard, and the deck.  Just come spend some time with us.  It passes too fast.

And WAY too much of it is spent at doctors, without much reprieve.


Tomorrow we head back to the dentist about those gums…