A Lesson in Brave

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To My Girl,

This week we wait.  Again.  We wait to see how nasty Cowden’s wants to play, and in what ways you’ll need to show it who is the boss.  Again.

You have every right to be frustrated.  To be mad.  To be fearful.  You could be negative, and self-absorbed.

But instead you’ve chosen to be brave.

And I have no words to express how proud you continue to make me every day.

You are strong.  You are brave.  You are focused.  You are successful.

I have learned so much from you, and I continue to learn.

Whatever this week brings, we will handle it.  Together.  Cause there is NOTHING in this world capable of stopping you.

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Just remember if you need a hug, a shoulder, or an ear – I’ve got all three.

Love you my girl,

Mom

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Rare Disease Day 2014 – Through Meghan’s Eyes

Yesterday, our local paper published an article about Meghan and Rare Disease Day.

http://www.silive.com/news/index.ssf/2014/02/post_738.html

Today, the Borough President came to our school about a 4th Grade reading program, and was so interested in Meghan’s story he took the time to talk to her.  She was so thrilled by his genuine nature, and his true interest in her.  Not too shabby of a smile for a kid just 2 weeks post op from a complete thyroidectomy!

Meghan chatting with Borough President Oddo!
Meghan chatting with Borough President Oddo!

Today,  Meghan addressed the school about what it was like to live with a Rare Disease.  She spoke eloquently and passionately.  The students were phenomenal.  She was exceptionally BRAVE.

This is her speech.

Living with Cowden’s Syndrome

Every day I have pain.  Cowden’s is a Rare Disease that never gives you a break and always keeps you on your toes. Cowden’s is a blessing and a curse. I am grateful to Cowden’s, for it has made me who I am today. Cowden’s is also a curse, to have to go through what I do. I DON’T want others to have to do what I do. NO ONE should have to endure the countless doctor’s appointments, tests, hospitalizations, and surgeries that a person with Cowden’s Syndrome has to endure. 

Today is February 28th. To many people today is just Friday, but to others, February 28th is Rare Disease Day. Rare Disease Day is to raise awareness about Rare Diseases world wide.  Rare Diseases are an issue. 50 percent of Rare Diseases affect children. 300 million of the earth’s population has a Rare Disease.  There are over 7,000 Rare Diseases and less than 400 treatments with, currently NO CURES! With Rare Diseases you need all different types of treatments.  Treatments and surgeries can be helpful, but they don’t fix the problem permanently.  Rare Diseases aren’t contagious. If someone in your family, or a friend of yours, has a Rare Disease, that doesn’t mean that you will have one.

We chose the movie BRAVE for tonight’s movie night on purpose.  When you have a Rare Disease you have to be brave.  Individuality is very important. No matter who you are, EMBRACE it and  be BRAVE.  Be an individual. Being BRAVE is about not being scared to be you. Don’t just follow other people. BE a leader, be BRAVE! You are who you are so why not recognize that and make the best of it? Explore and be BRAVE. 

 Until September of 2011 I did not know I had this Rare Disease, or ANY Rare Disease. All I knew was that my body was far from NORMAL.  All I could do was be BRAVE. Every single second of every single day all I CAN do is be BRAVE. You never know what is lurking around the corner. All you can do is prepare yourself and stand up tall against all odds. All you can do is be BRAVE. 

Once I learned that I had Cowden’s Syndrome I researched it. It means that my PTEN gene is broken. Your body is made up of all sorts of G-E-N-E-S not J-E-A-N-S like the ones you wear. PTEN is the gene in your body that keeps your body from growing tumors. With a broken PTEN gene, I learned that my body was more likely than other people’s to grow tumors, and that sometimes those tumors could be cancer.  Imagine how scared I was, and how I needed to be BRAVE. Cowden’s Syndrome has different versions of the same symptoms on each person. 1 in 200,000 people have Cowden’s Syndrome. Another thing I thought was interesting was that 80 percent of rare diseases are from genetic origin. 

 I’ve always wanted something to represent me. I knew there was the gold ribbon for Childhood Cancer, the pink ribbon for Breast Cancer, so on and so on. I NEEDED something to represent me. That is why I have this first of a kind denim ribbon necklace. It is the first of its mold and has a ONE OF A KIND inscription on the back. My mom and dad have one too.  The support I get from my family is incredibly inspiring.  I REALLY want to make more people aware, as you can see. 

 All you can do with Rare Diseases can do is be BRAVE. Look danger, sadness, disappointments, and diagnoses in the face. Be prepared. Don’t let it break you. For each and every Rare Disease, stand up to the challenges it brings, and don’t let them break you. Let it make you stronger.

 When I’m here at school I put on a mask. A mask of happiness, of making people think that I can brush everything away. No one knows that under that mask is a girl with the weight of the world on her shoulders. All I can do is be BRAVE. I cannot do what everyone else can. I struggle to fit in and find acceptance in the world. All I can rely on to make me smile and laugh are my friends. They are part of the reason that I can keep up the mask. I will never let anyone know what I think. That is who  I am and what I do. NEVER judge someone by what they look on the outside. I am a perfect example of this. 

        Be KIND, be AWARE, Rare Diseases are EVERYWHERE!

And then – as if I wasn’t proud enough…. she put this video together all by herself….

Such a proud Mom!  Spreading the word…. LOVE this kid.

Can’t wait until tomorrow for MOVIE NIGHT!

Superheroes…

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

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

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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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Generous Heart

I’m not exactly sure how the idea got into her head.  At some point Meghan learned it to be possible to donate your hair to make wigs for people who had no hair.  And she decided that she wanted to do it.

For a bit of time it was talk.  We spoke about when it would be a good time, if her hair was long enough, and how it would feel to lose so much hair.  Then she got serious.

Sometime right after school ended she decided it was time.  So, we went to a new hair salon and had her hair measured.

“Close,” they said.  “Come back in about 2 months.”

And, as summers go, time passes and 2 months is gone.  We made the appointment for today so she would have time to “adjust” to the new hair if she wasn’t happy.

Before...
Before…
Almost ready...
Almost ready…

 

She was anxious but determined.  Confident that it was the right thing to do – she bravely sat in the chair.  Her hair was measured to ensure it reached the necessary 10 inches.

Then, even I held my breath as the pony tail was cut off.

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And as the hair fell down, the smile of relief sprang up.  She saw the life bounce into her hair.  She knew it would all be OK.

As she looked at her new cut, and adjusted to the reality that she had just done something HUGE for someone in need, I couldn’t help be overwhelmed with pride.

Once again, my girl led me by example.  Once again her bravery is unmatched.

You see last Friday we found a small bald spot on the top of her head.

Yesterday Meghan got the formal diagnosis of “Alopecia Areata.”  It hasn’t got a blessed thing to do with Cowden’s Syndrome.  Although being affected BY Cowden’s Syndrome has made us all more aware of the needs of others who suffer.  The denim ribbon we wear each day is a reminder of the Global Genes Project, and a search for cures, or at least awareness of ALL rare diseases.

Stress can trigger this unpredictable autoimmune hair loss.

We can hope the spot was a reality check for all of us.  A reminder to try to take some deep breaths along the bumpy road we travel.

We kept it from Meghan for the weekend, but as we headed to the dermatologist Tuesday the conversation had to happen.  We go through too much here not to have each other’s trust.  I answer questions as briefly as she allows, but I always answer honestly.

There is no way to know what path it will take, if this will (hopefully) be the end, or the beginning.  Alopecia Areata is a life-long condition.  It may stop now and rest forever.  Or maybe it won’t.  We just don’t know.

But we are kind of used to that around here.  There are no “plans” anymore.  Only guesses, and hopes, and prayers.

And thankfully we live with the confidence that there is a greater plan than any of us can wrap our heads around.

For now, some beautiful little girl will soon receive a wig made in part by Meghan’s beautiful, curly hair.

My beautiful, BRAVE, GENEROUS girl!
My beautiful, BRAVE, GENEROUS girl!

Bravery/ Courage

Brave

Bravery – Ready to face and endure pain; showing couragecourage
Courage – strength in the face of pain or grief
It’s not a secret how I feel about my girl.  It’s not a secret at all that I hands down find her to be one of the bravest and most courageous children I have ever known.  She faces adversity better than most adults I know.  She presses onward with determination, not drama.
I don’t mean for a minute that there is never a hiccup on the path.  That would be delusional, and even unfair for a child who has yet to pass her 10th birthday.  But I mean, that despite the pebbles, rocks, and sometimes boulders tossed in her path, she keeps her head up and stays focused on what matters.
Yesterday we has testing at MSKCC in NYC.  We were told to arrive by 8:30 AM for testing at 9.  It was to be a 2 hour pituitary function test, followed by an ultrasound at 12:30.  Then we would be home by about 2.
So we woke at the crack of dawn – a nasty habit this summer – and arrived in our designated spot by 8:20.  As we were meeting the oncology nurse, a truly LOVELY and compassionate woman- a representative from the doctor’s office came bustling in to tell us the medication needed to start her test had not arrived at the hospital, and should be there by about 3.  She then proceeded to tell me maybe I wanted to reschedule.
Let’s say succinctly that the conversation that followed took place out of Meghan’s earshot.  The medication would arrive at 3.  We would have our ultrasound at 2.  And everything we left the house for bright and early WOULD be accomplished, before we headed home.
I can be a calm and rational person, at the right time.  But, the right time is NOT after you confirm an appointment at 4:30 PM the night before and FAIL TO SEE IF THE NECESSARY MEDICINE IS ON SITE!
So, I saw the woman off on her tasks to fix what had been broken, and I took the cues of my girl who thought, “We are in Manhattan – Let’s see Daddy.”
We took the shuttle to 53rd street and 3rd Ave.  Then we WALKED to 42nd and 7th.  Just in case there was even the slightest doubt that Meghan needs her wheelchair in Disney – it has officially been confirmed.  The 25 minute walk each way did more damage to her legs than I could have imagined.
Toys R US times square
But, we did get to Toys R US.  Meghan has been there before, as it is one of the stores her Daddy helped light before it was open, and it is so close to his office, but a toy store of that size is a huge thrill nonetheless.
She left with a Merida doll from the movie “Brave.”  Ever so fitting in so many ways.  I knew Daddy would have to take the Barbie size one home with him, so we surprised her with a Polly Pocket sized one when we got back to the hospital.
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Why did you like this doll, Mom?        
Because YOU are the BRAVEST girl I know.
The shuttle took us back to MSKCC by 1:30.  We promptly bought Tylenol for legs that could barely carry her and went to endure a 40 minute ultrasound.  Then it was back up to the floor for the test.  The medicine arrived – barely, just barely, but it arrived in time so that after an IV was placed, and a super painful injection given – we began the 9AM test at 3:15.
And there she sat, for 2 hours, in her chair.  Reading, playing with her iPad, watching movies.  Uncomfortable.  Exhausted.  Brave.  Courageous.
It may take a week or more to have the test results, and I will pray as I always do, that they return without any evidence of a problem.  But, time will tell, and the waiting game is one we are well practiced at.
So as we arrived home at about 7 last night – 12 hours after we left for the day- we consumed a giant dinner prepared by Daddy, and my poor exhausted girl took some more Tylenol and fell fast asleep.
Only to be woken this morning by the ring of the alarm clock.
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An 11 AM MRI/MRA of the wrist was waiting for us at 1st Ave and 38th Street.  The June 4th injury never healed, and it was finally time to get some answers.  The doctors we have seen all have differing opinions.  AVM? Arthritis?
When I tell you I have actually lost count of the number of MRIs my girl has had, you may find that odd, but there truly have been THAT many.  We have the pattern pretty much down.
We let the (hopefully) nice nurse pick the IV spot.
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Of course this time, since it was a scan of her RIGHT wrist and hand, the really solid veins in the RIGHT side were off-limits.  So, after two painful sticks to the left, she ended up with the IV on the side of her wrist.  And even with the discomfort she was in, she listened intently as the camera was placed in the MRI room, and absorbed her directions on positioning.
My cursory question of “How long?”  Was answered with “Less than 45 minutes.”  It’s almost a silly question to ask because I have no watch, no radio, and no means of telling time in the room.  But, somehow it makes me feel better.
Ear plugs in place, the door closed us in, and she headed into the tube.  My hands remained on her ankles, and I could hear the deep breathing.  It was just her and Merida inside the tube now.  Bravery at its best.
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It was 11:25.
It was well past 12:30 when we were told to wait it out while they ran through the images to be sure the doctor saw them.
time-warp
And then it was 12:45, and some time after 1:00 we were taken to another room.  Another room with a smaller tube and a stronger magnet – for a few more pictures.
This doctor, this attending, at the hospital reviewed her images, and wanted more.  This doctor I will never meet, who is not the radiologist who will read the images, who somehow got called by the tech doing the exam.  This doctor wanted more pictures.
So as Meghan laid on her belly in the tiny tube with Merida by her side, she sensed things weren’t quite right.  I gave her an abridged version of my inferences.
Then I chuckled at her response.
If something is wrong with my wrist, how will I do the archery we signed up for in Disney?
We will make it work Meg.  No worries.
And she laid, quiet and still as could be as 5 minutes became 20 before we were done.
So that’s it?  You aren’t going to tell me anything?  I asked the tech.
I am not a doctor was the painful reply.
Understanding they can’t, it didn’t help the growing pit in my stomach.
Your doctor will have the results  Monday afternoon or Tuesday morning.
Meghan got dressed and I held her up as she limped the 6 blocks to the parking garage, an all too familiar summer scene replaying itself. It was 1:45 PM.
Last night I asked when I was going to get a break.
I take it all back.
BEATING COWDEN’S will require stamina and strength I never imagined I could have.
I will continue at this pace forever, and as I wait for the test results I will be buoyed by the Bravery and Courage of my favorite 9-year-old.
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