Unsung Hero

There is a hero in this war on Cowden’s Syndrome, this draining task of “beatingcowdens” that we undertake each day.  He doesn’t get much attention, and he prefers it that way.  Yet, I shudder to think where we would be in this war without our strongest soldier.

He never could have known almost 16 years ago what he was getting himself into.  Yet, somehow every day I feel the strength and power of his love.

Lori & Felix Wedding

We stood in front of God, and our family and friends on that chilly April day in 2000, and he promised to love me, “for better or for worse, in sickness and in health…”  And he surely has been true to his word.

I am not to sit here and say, “life is perfect,” or “we never disagree.”  Because I would be lying, and frankly that would be boring.

But, we work together.  We swallow pride when it’s necessary.  We say I’m sorry.  We forgive.

never alone

And, what I can say, is there is not a chance Meghan and I could spend our days “beatingcowdens” without him.

Most often he is not physically with us.  He works later than I do.  I pick up the afternoon appointments, local or in NYC.  I drive to swim practice.  I wait there and drive home.  I am gone hours and hours every day.

We communicate via text a lot.  I type a paragraph, he answers in a word or two.

Yet there is this sense of companionship we share from afar.  While he can not be with us at all the appointments, or the practices, or the general running around the days take us on, he is home, with us in mind.

I can not tell you how often we walk into a house full of the smell of a freshly cooked meal.  It’s not unusual for me to find a bed full of clean and folded laundry.  The dogs are cared for.  The candles burn all winter when the house is closed and stale.  The floor is clean.  Little is left out and around because he knows my compulsions and respects them enough to help me when I’m not home enough to help myself.

love

None of these tasks are trite.  They are what provides me with the momentary glimpses of sanity I so desperately need.

He is patient when we talk about fundraising.  When the whole month of January, and part of February will be consumed with “Jeans for Rare Genes 2” because Meghan wanted to DO something.  He works, behind the scenes, ever-so-quietly to spread the word, raise awareness and get things started.

He backs up technology and sits through software updates.

He updates, paints, and fixes just about everything.  And he really HATES painting.

He is a father above and beyond all things.  He loves our girl so completely she still holds his heart in her hands.  He is her way to unwind from her tightly wound Mom.  He is her chef.  He knows how to tease her until she laughs, and how to hold her most precious needs close to his heart.

And when the night rolls around, and the weight of the day presses heavy on my heart, he has the right balance of knowing when to hug me, and when to make me laugh.  My worries transcend even Cowden’s Syndrome, and the list of prayers grows deeper every day for those we love who fight more than their share of battles.  He knows just what I need.  All the time.

Cowden’s Syndrome permeates every day of our lives.  It’s reality.  It is 5 surgeries for Meghan in a little over a year.  It is 70 minutes on the ultrasound table for me this weekend, hoping, praying that I had the most thorough tech ever, and she didn’t actually FIND anything.  It is next steps, and strategies, and switching doctors, and making decisions, tough decisions.

The saying goes that if we all tossed our problems into a pile, we’d take our own right back.  I would… if and only if I could continue to run through life with my husband and my daughter by my side.

Here’s to the unsung heroes in all of our lives… for the STRENGTH and COURAGE they provide.  Give them a call, or a text, or a hug.

Love-Gives-Strength-and-Courage

Twelve Surgeries in 11 Years: Living With Cowden’s Syndrome

http://blog.silive.com/gracelyns_chronicles/2015/01/twelve_surgeries_in_11_years_l.html

The content of the article is pasted below.    Please click on the link above to read the story in full effect.  The photos were added below as reflection by me!

This article appeared in our local paper.  Dr. Santos did an outstanding job capturing Meghan’s essence.

By Dr. Gracelyn Santos | gsantos@siadvance.com
Email the author | Follow on Twitter
on January 08, 2015 at 11:00 AM, updated January 08, 2015 at 1:52 PM

STATEN ISLAND, N.Y. — Meghan Ortega, a Westerleigh sixth-grader, is one of my favorite dental patients and one of my twin daughters’ dearest friends.

A graduate of PS 29, Meghan is a Principal’s Honor Roll student at Markham Intermediate School in Graniteville. She loves drama, is an avid reader, loves to swim and has a broad smile and sunny disposition.

Meghan also happens to be one of the bravest kids I know. In her 11 years, she has had 12 surgeries. Twelve. She hurts every day, but has learned pain is part of her life.

Meghan has a rare genetic disorder called Cowden’s syndrome.

Cowden’s falls under the umbrella term of PTEN hamartoma tumor syndrome. The PTEN gene, which suppresses tumor growth, malfunctions, resulting in benign and malignant tumors developing all over the body.

Approximately 30 percent of children with genetic disorders die before their fifth birthday, so Meghan is fighting for her life with preventive screenings and surgery.

As her dentist, I saw firsthand one of the oral manifestations of Cowden’s syndrome — a suspicious gingival (gum) growth — for which I referred her to an oral surgeon for biopsy and excision.

Not once did I ever hear Meghan complain.

The PTEN gene is passed on in an autosomal dominant pattern and is rare, affecting one in 200,000 people. The cancer risks are high; the lifetime breast cancer risk seems to exceed the BRCA risk, and there are significant risks for thyroid, uterine, kidney, skin, colon, and countless other malignancies.

To keep a close eye on the disease and its progression, Meghan sees doctors regularly for preventive screenings — including biopsies.

But she is just happy that she finally has a diagnosis.

When Meghan was a baby, her parents, Lori and Felix knew something was “not right.” She was chronically ill. She suffered with gastrointestinal distress well past her first birthday, and her diet had to be free of gluten, dairy, soy, dyes and preservatives. Her gallbladder was removed when she was 3 years old.

Meghan also had a lipoma taken from her back and her tonsils and adenoids removed. She had to have a complete thyroidectomy because of 19 rapidly growing abnormal nodules on her thyroid gland, three of which were deemed pre-cancerous.

The most notable of the surgical procedures for Meghan’s abnormal growths were the five she had to undergo as a result of an AVM (arteriovenous malformation) in her right knee. While AVMs are not exclusive to Cowden’s syndrome, there is an increased incidence in the population.

Recently she was hospitalized for a week because the medication that helped control the AVM in her knee caused damage to her GI tract and her esophagus.
She was taken off that medication and is healing, but the pain has returned to her knee.

It is one of the constant smaller battles she fights with side effects of the multiple medications she must take.

Meghan is often at a doctor’s office. Barely a week goes by without at least one appointment. She waits like a champion for hours on end, because she is conditioned from years of practice.

Lori, her mom, firmly believes Meghan saved her life — because of Meghan’s diagnosis, she also was tested and confirmed positive for the PTEN gene mutation. She had surgery as well, a prophylactic double mastectomy.

In a world where we often get wrapped up in trivial annoyances, Meghan is an inspiration, a reminder that in the great scheme of things, people all around us are fighting real battles.

Although Meghan has met some great friends along the way, it is often a struggle for her to relate socially to most children, who likely have been to the doctor only once a year their whole lives.

Meghan’s experience of living with Cowden’s, combined with the food issues, can be isolating for her, realizing early on that talking too much about pain to her peers can also increase the isolation: It is hard for them to relate.

So she threw herself fully into support of other children and adults who have rare diseases, like the one she and her mom share.

She worked with one charity, the Global Genes Project (www.globalgenes.org) soon after she was diagnosed.

Meghan also sought a symbol for those with multiple medical issues and what developed was beautiful: A denim ribbon, a nod to the slogan, “Hope, it’s in our Genes.”

The first year after her diagnosis, Meghan simply wanted to hand out Denim Ribbons on World Rare Disease Day. The second year, she worked with the Student Council to organize a successful fundraiser at school.

Now, Meghan has struck up a friendship with Borough President James Oddo, who has invited her to Borough Hall several times to talk about ways she can make a difference. He has become her mentor, helping her find her voice.

This year, Meghan has organized a fundraiser to be held Sunday, Feb. 15, at Nicotra’s Hilton Garden Inn in Bloomfield, to raise awareness and money for rare diseases. To help others like her, many worse off.

Her goal is to educate everyone about rare diseases in general.  She is acutely aware that everyone struggles, but wishes there would be less judgment and more support. One of her pet peeves is people who say, “You don’t look sick.”

For more information about Meghan’s journey and to support her fundraiser, please visit her blog, http://www.beatingcowdens.com  Tickets can be purchased at http://www.eventbrite.com.

 

Alex and ANI hero front

wear that you care photo

do something

random-acts-of-kindness

Meghan 2014 Nominee for Global Genes Project Teen Advocacy Award
Meghan 2014 Nominee for Global Genes Project Teen Advocacy Award
2014 Kid of Achievement - Staten Island Children's Museum
2014 Kid of Achievement – Staten Island Children’s Museum

Rare Disease Day Fundraiser

 

Superheroes…

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

superheroes

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 it was home, handled IV poles and ports and masks, like they were additional appendages.

These people- the young ones and their parents, are made from a stock stronger than most of us.  They endure the unimaginable, day after day.  Some endure it for years on end.  And they press on – because that is what you do.

My beautiful cousin Meghan was one of those superheroes,
My beautiful cousin Meghan was one of those superheroes,

Sometimes it ends well, and some times it doesn’t.  But while you are there there is no time to think, or to wonder.  You must just press on.

That is the story that the 9th floor of MSKCC told me this morning, as we waited for preadmission testing.

Meghan had a 9 AM appointment and between blood work, and our meeting with the nurse, we had at least an hour to wait, and watch, and marvel, and wonder, and worry.

The biopsy is Tuesday.  The results will be in by Thursday so they say.

Then, we can make a plan.  They tell me they can get the thyroid removed in a few days if the biopsy is positive.

If it’s not cancer… get us home.  And, if it is – GET IT OUT OF MY LITTLE GIRL!

She will have nothing to eat or drink after midnight Monday.  She will be tired, and cranky, and hungry when we arrive on Tuesday.  But she will get anesthesia like she asked, and the procedure will be much more humane.

Then, we will wait.

strength

The Storms of Life

As we prepared for Hurricane Sandy as best we could on Monday morning, we stopped by my grandparents house to tie up their barbecue and a few other things.  Wind precautions.

We stayed for about an hour.  We had comfortable conversation in the living room.  The same living room they have occupied my whole life, and for years before I was born.

We spoke about the storm, the trees, and being ready.

We spoke for a while about some of the storms they have seen in their lives.

I am always amazed when I stop and really think of all the changes that have taken place in the world since they were born in 1919 and 1920.  They have done such an admirable job keeping up – with everything.

They have been a  constant source of strength, support, and pillars of faith for our family in the midst of many storms.

So as the wind picked up, we kissed them and headed home.

Some time around 3:30 I started to hear of power outages.  I instinctively picked up the phone to check on them.  Pop answered with a concerned voice.  “Your grandmother fell in the basement. Your Mom and Ken are here.  The ambulance is coming.”

Suddenly Hurricane Sandy didn’t scare me as much.

These were the storms I worried about when I wrote this Sunday night…

“The greatest storms of life aren’t the ones that threaten our things, they are the ones that threaten those we love.”

Grandma‘s 90th birthday in 2010

Hours ticked by.  Shoddy cell phone service kept the updates brief.  Pop went in the ambulance.  Mom and Ken followed behind.  Head CT for the trauma to the head, confirmed no bleeding inside the brain.  Stitched and stapled, they waited for more confirmations – no broken bones.  A significant bruise on her hip earned her a bed in ICU as they are waiting to just confirm that it’s not bleeding either.  Strong vitals.  Strong woman.  That’s my Grandma.

Four generations of strong women!

I went to visit her in the hospital.  She was itching to get home.  Annoyed by all the fuss.

The hospital, which had lost power was running on generators.  The storm was wild and raging all around.

The nurses in ICU were calm and patient.  Attentive.

I listened as they recounted medical history and was impressed and almost stunned to hear Grandma at 92 has NEVER had surgery.

Guess the Cowden’s Syndrome didn’t come from her!

Trees crashed all around us.  Storm surges cost so many nearby their homes and their possessions.  It was hard to stay upset for long about the inconveniences of lost power.

Local Hurricane Damage

I spent a few hours last night with Grandma again in ICU.  We are hoping she is released to home soon, and hoping her power is on REALLY soon.  I watched my grandfather, still a pillar of strength at 93, by the bedside of his bride of almost 67 years, and I once again was awed by their ability to weather the storms of life -together.

At Pop’s 90th birthday in 2009

No need to remind me how lucky I am.  I already know.  No need to remind me that angels exist in this life – several were clearly softening Grandma’s fall Monday.  No need to remind me that the storms will pass.  I have seen the models of resilience.  I have been blessed with them for each day of my life.  I will cherish them always.

I will pray.  I will pray for grandma, and her health.  I will pray for those devastated by hurricane Sandy.  I will pray prayers of gratitude for those who weather the storm to help others.  And, I will offer prayers of thanks… lots of them.

Serenade

I am sitting in the basement on the computer trying desperately to ignore the cricket serenading me from some other corner of the room.  My family has been asleep for hours.  Silently I have struck a deal with this insect, that if he stays far from me, I won’t try to squish him. 

Not a big bug fan, and since a quick google search shows me a photo of one of his distant cousins, I have strengthened my resolve not to meet the cricket tonight.  I don’t mind bugs, when they live outside where they belong.  I just don’t like them taking residence in my house!

So, he continues to sing, as I put 4 stamps on the CD of the sonograms of my abdomen from April and last Novemeber.  I included the reports and a cover letter to the oncologist.  Off they will go tomorrow, and hopefully they will safely arrive.  See I am really and truly ready to hear the definitive word that the spleen stays.  One more week…

Week – what a week it was.  I swear I am still sore from the boxes earlier in the week.  A true sign that I lost a lot of strength post operatively.  But, I am moved in.  And, after 2 hours on a Friday afternoon after the students, and most of the teachers had left – I am largely set up.  Finally!

Meghan loved her 4th grade teacher, even if it isn’t the one she originally wanted.  This one has all the skill, kindness and compassion of the other.  It will be a great year for her – academically.

Still so many medical questions unanswered.  I am so intrigued as to how a pituitary that is over working can be too small.  I am even more intrigued that this keeps only me, and apparently the cricket, up at night.

Answers.  I need answers instead of more questions.  But I fear it just isn’t to be.  So, I will head to bed before I am forced to meet the insect that has been singing my lullaby for the last 2 hours.