“I am the Lorax, I speak for the trees.”

The call came to my cell phone on a Friday afternoon a few weeks ago.  It took me a few minutes to process that Sharon from the Teddy Atlas Foundation was telling me Meghan had been selected to receive the  Dr. Theodore A. Atlas Humanitarian Award.  The award is named for a local physician who epitomized the concept of what it meant to be a physician through more than a half century of people centered care on Staten Island.

Dr. Theodore A. Atlas Biography

I knew of Dr. Atlas, who did most of his work before my time, because I followed the work of the foundation, started by his son, Teddy Atlas Jr.  The Dr. Theodore A. Atlas Foundation is a name known to locals who are inspired by stories of people helping people.  I had watched this foundation through the years, grateful that people who genuinely want to help are not afraid to just do it.

Teddy Atlas Biography

I know I stumbled, and may have sounded like a bumbling fool as I asked her to repeat herself.  “Yes,” Meghan will accept gratefully, I replied without asking.  I was given the date and time for the dinner.

I’m not sure either of us really grasped the enormity of the honor until we looked up the event on line.

Teddy Dinner celebrity line-up

We had just struggled to get 100 people in a room for a fundraiser.  Here they were looking at close to a thousand – from big names to community favorites.

When she learned she’d need to give a brief acceptance speech, she took a deep breath, and then thought.  A whole lot.

We talked about humanitarian, as a word and as a concept.  The more we bounced it around, the more we both knew the concept suited her.  Meghan has always wanted to make a difference.  She has always done what she can to speak for those who can not speak for themselves.  She is not sure what her future career will be, but she is sure that she must know she is ‘helping.’

We talked about quotes.  I gave a few suggestions.  She came back to me with Dr. Seuss.  She nailed it.  As usual.

The Lorax speaks for the trees.  They can not speak for themselves, so the Lorax advocates for them.  It resonated with her.

Here is Meghan’s speech:

Good evening, I am extremely humbled and grateful to be standing before you tonight.
When I was 7 I never thought my life would turn out this way. I never thought I’d be accepting a prestigious humanitarian award. When I was 8 and my life was turned upside down by a diagnosis I didn’t understand, I was in shock. By the time I was nine, I realized that no one even knew what my disease was. Then I realized that if I didn’t do something, there was a chance no one else ever would.
Cowden’s Syndrome is a mutation on the PTEN Gene, a tumor suppressor gene. Because of this disorder I have extremely high cancer risks, and grow a lot of tumors. I am in the hospital being poked and prodded on a regular basis. I am constantly scanned and monitored. Every time I step into a doctor’s office I am holding my breath, praying that I will get even just two more months of peace, without a procedure. I am 15, and I have had 18 surgeries. This disease has tried to break me over, and over again. And, because of this, with each passing day I become more determined to overcome these challenges, win my daily battles, and lend a helping hand to others in need.
I am living the life of a rare disease patient. I am closely acquainted with the downfalls and struggles of my disease, and others. Because of this, I am fully cognizant that there is very little awareness about rare genetic disorders. Some of these disorders are fatal, and others can just make your daily life torturous.  
My disorder specifically is sometimes classified as an “invisible illness.’ No one sees my scars and my struggles because I don’t ‘look sick.’ I present as a healthy and intelligent teenager. When I was little I used to wish all my scars were able to be seen, and that they were all over my skin. I thought that maybe people would start understanding what patients like me go through a bit more if they saw some of the ramifications of these diseases.
Cowden’s Syndrome has not just impacted my body. There are undeniable, severe mental ramifications that have come with my struggles. I have a depressive disorder, an anxiety disorder, and PTSD secondary to medical trauma. In no way am I even close to normal. I have to fight ten times harder for what someone else can do physically. I struggle mentally to live a normal live and get past the anxieties that control my daily life.
I have been bullied since elementary school there are some days where I come home, curl up in a ball and cry. It’s really hard to make friends when you’re at the doctor so much, and it’s even harder to deal with teenage drama when you’ve had to act so much older then you are your whole life. Whether it’s been because I’m different and they don’t understand, or because I catch on to things quickly, I always find myself that kid with the target on my back for bullies.
People like to say to ‘not let your hardships define you.’ Personally, I think that’s idealistic and impossible. The events that you have gone through in your life have created who you are. Sometimes I wonder what life would be like if I did not have this rare disease. Then I shake myself out of it, and realize that I’m a pretty cool person who has the ability to change lives. And, that if I didn’t have Cowden’s Syndrome, I wouldn’t be growing into the person I am.
My mother and I host annual fundraisers called “Jeans for Rare Genes.” They started out with all of the profits being donated to the Global Genes Foundation, a 401C3 organization that raises money around the world for the purpose of providing support to patients with rare diseases. Then, the PTEN Foundation, an organization specifically devoted to patients with PTEN Hamartoma Tumor Syndrome (Cowden’s Syndrome) was born. Once this organization was created, we began fundraising for them. To this day, our annual fundraiser is one of the biggest donations that goes into this organization and I am proud to know that our work is making a difference.
There are less than 2,000 diagnosed Cowden’s Syndrome patients in the US. Sometimes it is hard to see the light at the end of a lonely tunnel.  The PTEN Foundation is close to putting up a patient powered registry that will start things moving in the right direction. We have a long way to go.  We need funding for research, and then we need medication and hopefully a cure. There is far too little awareness about Cowden’s syndrome and all rare diseases in general. They are very real, and very present in our society.
This honor will serve as a stepping stone for me. My awareness efforts are not nearly done. In fact, I view this as a new chapter in my life, where I will have the confidence and courage, needed to continue raising funds and awareness, and that I may hopefully be a part of changing the lives of other rare disease patients.  
In the words of the Lorax in the famous Dr. Seuss book, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”
With the number of people who care in this room tonight, I look forward to a future of hope and promise. Thank you.

The speech ended with Teddy Atlas committing $5,000 to the PTEN Foundation on Meghan’s behalf.

It made me extra glad that Kristin, the PTEN Foundation President, who has become a dear friend, had made her way to New York from Alabama to celebrate with us.

Yesterday, November 15, 2018, NYC was almost totally crippled by an unexpected snow storm.  In all of my years here I have never ever seen anything like it.  I have seen worse storms, but NEVER the crippling state of things I saw yesterday.  I left work to get Meghan at school at 2:20.  On a busy day it takes me 22 minutes to arrive at her school for pick up.  At 4:10, after crawling for HOURS and getting so close,  I was being pushed up a hill out of a pile of snow.  I was in such a state, feeling frantic that I was literally not able to get to her.  And even though I knew she was safe, it was a helpless feeling I’m not looking to duplicate any time soon.

November 15, 2018

At 4:15 she sat in my car while we turned around to head back.  At 5:35 the 8 mile round trip was complete, but we weren’t out of trouble.  Three hours on the road and I never saw a plow or a salt truck.

My parents agreed to drive in their very capable pick up truck.  My husband made it safely off the bus from Manhattan.  It was far from the poised and put together departure I had hoped for, but we got there.

I’m not going to lie, there were a few moments there where I thought, “WHAT THE HECK?  Why does EVERYTHING have to be surrounded by drama?”

But I pulled myself together.  There are far bigger problems in the world.  We made it.  We were safe.  We were together.  Meghan’s dear friend greeted us there.  I looked around and soaked up the enormity of the honor my 15 year old was receiving.

I looked around the room full of energetic, generous spirits.

I looked in the booklet on the table and found this.  Despite a few minor errors, the idea that this was published here.  Now.  For everyone.  Well, it kind of blew me away.

I listened while Ciaran Sheehan sang, with chills down my spine.  Having played leading roles in two of Meghan’s favorite Broadway shows, “Les Miserables,” and “Phantom of the Opera,” he was the one she wanted to meet.  And she did.

My girl is not perfect.  She struggles.  We argue.  She sometimes acts like a teenage girl and I have to remind myself she is one.  She is intense.  She is focused.  She is determined.  She is deeply principled.

She is learning to find balance.  She is learning to laugh.  She is learning to pause.  To believe.  She is letting herself be successful.  She is working daily on becoming the best version of herself.  She is my hero.

And Meghan, as one of the “trees,” I am happy to have a “Lorax” like you.

Because as Dr. Seuss said, “Unless someone like you cares a whole awful lot, nothing is going to get better.  It’s not.”

You are way more than

#beatingcowdens

You’re going places kid.  And I’m so grateful to be along for the ride.

(Living) “In Prep for the Climb” – PTEN Awareness Day 10/23/18

I’m aware of Breast Cancer.  As a survivor now of 6 years and the daughter of a 21 year survivor, I am aware as I dry from my shower facing my mastectomy scars every morning, that breast cancer is reality.  As my Facebook feed and my memory are both too full of those we have lost and those who still face this disease, we are aware.  What I wonder, is how much help is the awareness?  It is a topic that could be debated forever, but I’ll change gears first.

Something else I am very aware of is the PTEN gene located on chromosome 10q23, and the perils its associated mutations can cause.  So when the PTEN Foundation let us know that 10/23 was designated PTEN Awareness Day, we were all in.

This blog has, for years been designated to the ups and downs of this mother- daughter duo dealing with Cowden’s Syndrome, the diagnosis we both received in late 2011 after a PTEN mutation was first diagnosed in Meghan, and weeks later in me.

The few years following were an absolute whirlwind of appointments, scans, screenings and surgeries.  We worked to keep our heads above water and just exist.  We considered keeping my job, and maintaining honors status in her school quite the accomplishment.

We were told things over and over, like “don’t let it define you…”

I’ve got some news for you.  You can only walk so far into the fire without retaining the scars.

True awareness of PTEN for us comes with comprehension of the gravity that you have to remain in a vigilant stance of preparation, awaiting attack from your own body at all times.  PTEN patients have ridiculous cancer risks pretty much all throughout, and the VIGILANCE required to stay ahead is utterly grueling.

We are faced with choices to keep the most high risk organs, or remove them prophylactic ally.  We are asked to play the odds.  With our bodies. All the time.

With Meghan the AVM (Arteriovenous Malformation) in her right knee, though quiet now, has caused damage she will deal with forever.  She is 15.  God willing she will walk on those legs another 80 years, each day aware of the pain, and of the symmetry removed from her body forever.

When you have to be vigilant, you have to plan.  There are trades.  You have to decide if you’ll miss school with friends and fall behind in classes or give up the breaks designed to recharge you.

There are no breaks.  February – months away has 3/5 of its break and 2 other days devoted to appointments.  Martin Luther King Jr. Day in January.  Yep – that one too.  Don’t worry, the brain MRI is scheduled for April break….

You have to pick and choose.  And the decisions are hard.  You want to give it all to everything, but HOURS of your world are wasted in bumper to bumper traffic, waiting for the hopeful news that you have another 6 months before you come back.  And if, in fact you don’t get that news the schedule is tossed and it’s game on for scans, analysis and biopsies.

The pain.  No one can really tell us yet from why, but it seems to exist throughout.  The fatigue.  Maybe the thyroid issues, maybe some immunological stuff.  Maybe some connection yet to be determined.  But it’s real.

It’s as real as the number of times we had to decline invitations before most people stopped asking.

We’re not blowing you off.  We’re holding it together – by a shoestring.

Chronic Illness is hard to live, and we get that it’s difficult to watch.  But, it’s real.  And short of a cure, it will never “run it’s course.”  It will not BE us, but it will be PART of us – FOREVER.

“You don’t look sick…”

“You don’t look anxious…”

No, as a matter of fact she looks strong and determined.  She’s been practicing for quite some time.

Sometimes I have to bite my tongue to keep from replying, “You don’t LOOK ignorant either – but at least you can fix that if you WANT to…”

Our rare disease journey has opened our eyes to not only PTEN disorders, but “Lhermitte-Duclos disease,” “Nail-Patella Syndrome,” “Lynch Syndrome,” “Spinal Muscular Atrophy,” “Muscular Dystrophy,” “Neimann- Pic Disease,” ” Neurofibromatosis,” “Acute Myeloid Leukemia” to name just the very tip of the iceberg.  I am more aware than every that everyone struggles.

I’m also a big fan of real pure awareness, for the sake of learning something about other humans I share the planet with.

One of the humans I share my home with has grown up in a totally different direction courtesy of this disease.  And while I am grateful for her diagnosis, as it surely saved my own life, I am sad that she has had to see so much, and manage so much already in her life.

So today, on 10/23, if you’re not living with it yourself, direct yourself to http://www.PTENFoundation.org, or the PTEN Facebook Page and learn an little more about PTEN.

My own girl is working every day to make herself better, physically, mentally and emotionally.  When I have down days, or I just don’t feel well, she reminds me to forgive myself.  “You have it too Mom.”  Indeed I do, and it’s quite a ride…

“Prep for the Climb” Disney’s Hollywood Studios

Together we prepare for the climb each day – and seek out that ‘One Perfect Moment’

For as much as this disease has taken, I am grateful that she is starting to take back control, and is finding her voice as an advocate for herself and others.  (And I love listening to her sing too…)

#Beatingcowdens

Bring It On the Musical – One Perfect Moment Lyrics
2012 Broadway
Bring It On the Musical – One Perfect Moment Lyrics
I’m not freaking out, I’m really okay
I’m totally chill or I will be someday
‘Cause I’m so near the top but there’s so many mountains to climb
There are plans to be planned, drills to be drilled
‘Cause this dream that I’ve dreamed is becoming fulfilled
And I plan to enjoy it but right now, I don’t have the timeFade in on Campbell, an average teenager almost grown
Close-up on average grades from the average life she’s known
Now zoom in the lens on the rest of her friends as she stay alone
Doing the work, getting it right

‘Cause I know we’ll have to be practically perfect
So I’ll go above and beyond and pull through, this I can do
All that I’m asking is one perfect moment in time

I’m seventeen, there are so many things that I can’t control
If I start to freak, or feel weak, I focus on just one goal
Turn down the panic, attack this routine like it owns my soul
Turn up the music so loud that it swallows us whole
And then there we are, we burn like a star
We’re safe inside the world we know
Then suddenly I’m in prep for the climb and here I go
High in the air, there is a moment just before you start to fall
Live in that one moment

I know that if I can just stick the landing
Then I’ll know that somehow my life will be fine
And I’ll go through the rest of my life understanding
What it feels like to shine
The future’s full of mysteries
So please let this be mine
My one perfect moment in time

No Excuses. No Apologies.

Recently I asked that Meghan’s “Present Levels of Performance” on her IEP be updated.  She no longer receives many services, but I find great value in keeping this section current.

There is a great deal of misunderstanding involving Individualized Education Plans (or IEPs) and many people feel only children who struggle academically have an IEP.  This is just not true.

My daughter has had one in place since Kindergarten.  She has consistently maintained high honors, and as a matter of fact was Salutatorian of her 8th grade class, and is in an intensely challenging International Baccalaureate program at her high school.

IEPs by definition, are to “Individualize” the Education Program as needed.  Meghan’s needs are not academic, as much as they are residual connected to the Cowden’s Syndrome, the PTSD, and the medical trauma.  The resulting anxiety affects every area of life, and is far deeper than “teenage angst.”  We work extensively outside of school to address this in many ways, but sometimes we need the school to be on the same page.

Much like you give a medical history to a doctor when you see them for the first time, and you update as situations change, the IEP is to be fluid and updated as changes occur so all personnel will be aware of Meghan’s needs.

I make a habit on the first day of school of copying a few key pages of the document and giving it to her teachers.  Even though they have access, and technically it is their responsibility, I am also a teacher.  I get the pressures placed on us.  So, I make their lives easier by giving them what they need and an invitation to reach out to me with any questions.  Her teachers are historically receptive and appreciative.

This year I was reviewing that section on the document realizing how much was no longer accurate, and how it should be more detailed.

I sat with Meghan to write the summary below:

Meghan is a 15-year-old sophomore in the IB program at School.  Academically she is consistently above average in her classes, attaining high honors every marking period for the 2017-2018 school year.

She is a student athlete as well, participating on the School varsity swim team, as well as Trident Aquatics, a 12 month competitive swim program on the Island.

Meghan has several medical diagnoses.  The most far-reaching is “Cowden’s Syndrome” a mutation on the PTEN (tumor suppressor) Gene, causing benign and malignant tumors as well as vascular malformations.  Recently PTEN mutations have been correlated with low levels of (infection fighting) immunoglobulins, which Meghan also suffers with.

Because of the low immunoglobulin levels Meghan has frequent infections that often require antibiotics for resolution.  She suffers with gastrointestinal distress with each course, and needs to avoid gluten and soy.  She also has an allergy to dairy.

Meghan’s medical challenges are far-reaching.  She has had 18 surgeries, 8 of which have been on her right knee.  There was an arteriovenous malformation (AVM) in that knee.  While it has been controlled, the long-term effects will last forever.  Meghan has leg and foot discrepancies on her right side.  The blood was restricted from flowing to her right foot for so long, that it stopped growing 6 years ago.  The left foot is a full size larger than the right foot.  That right-sided weakness has been repeatedly treated in physical therapy, but still presents as a struggle with stairs, and long walks.  While she endures these activities, they can cause pain and excessive fatigue, and extra time may be necessary between classes located far apart.

Meghan had her thyroid removed in 2014 and the resulting need for synthetic medication has yet to be regulated.  Her current endocrinologist follows her 4 times a year, adjusting, tailoring, and trying to balance her levels.

Meghan had 2 D&C procedures during 7th grade.  Those procedures yielded precancerous tissue in her uterus and prompted the need for birth control pills to try to stop the cellular growth.  Those pills have also been difficult to regulate and balance.

Meghan has been hospitalized countless times in addition to her surgeries.  She has also undergone over 30 MRIs and close to 10CT scans, each requiring IV.  She spends countless hours being poked and prodded at doctors, monitoring her cancer risks.  She is acutely aware of her mortality at an age when most teens are barely aware of their social interests.

In the spring of 2017 Meghan was diagnosed with Post Traumatic Stress Disorder, secondary to extensive medical trauma.  She was also diagnosed with major depressive disorder.

In the fall of 2017 Meghan began to develop panic attacks.  Subsequently, she has also been treated for panic and generalized anxiety disorder.

She sees a social worker weekly and has guidance on her IEP in school.  She sees a psychiatrist monthly who manages the medication, which currently consists of and antidepressant and another script for panic attacks.

The panic attacks were well controlled for a time, but flare up in acute anxiety.  This summer saw several severe episodes.  We are working together to help her through all of this.

Meghan is waiting for a service dog, which should arrive in the next 4-6 months, to address the PTSD.  In the mean time, we are teaching strategies to deal with necessary stress, and tools to eliminate unnecessary stress.

I presented this document to the team to update the IEP.  I was a little startled when I was met first with a challenge on the diagnoses.  No problem I told them.  I would send the doctor’s notes.

I love her school, I do.  But, I was in fact also told “She doesn’t LOOK sick”  and “She doesn’t LOOK stressed.”  While I had to breathe a few times before responding, I came up with “You’re welcome…”

We’ve worked quite hard on all of that.  My girl has goals.  Life goals.

Last week Meghan was approached to remove the section regarding the D&Cs from the document above.  She declined.  She was pushed, and told the information was “far too personal.”

Forever practical, Meghan reminded them the document was about her, and should include factual information.

Again pressed, she reminded the staff she helped write the document they were holding.  She wanted and NEEDED her teachers to understand the validity behind her anxiety and PTSD symptoms.

The final time they told her the information was too personal she reminded them that she had done nothing wrong, and had nothing to be embarrassed about.  Meghan is a factual child.  She likes actual truth being reported.  She knows better than to be embarrassed about truth.  She knows ugly truth is a real part of life with Cowden’s Syndrome.  She also knows that secrets give power to things that don’t deserve it.

These things happened to her.

She did not ask for them.

She did not cause them.

She will not hide them.

She will not apologize for them.

She will not let them define her.

But the things that happen to us do change us.  HOW they change us is the only thing we can work to control.

I will continue to work the Mom end to get this updated.

I am beyond proud of her growing confidence, and her desire to educate.

I am proud of her desire to be a scholar and an athlete in spite of all the adversity.

I am proud of her respect for the clock as she grows as a swimmer, and her desire to be the same as everyone else, by beating the same clock.

My girl is, and shall remain

#beatingcowdens

And that is why we continue to work on the journey towards treatments and a cure.

Please consider joining us or making a contribution.  You can reach us at jfrg.pten@gmail.com

Non maleficence- Meghan’s monologue

Meghan recently had a drama assignment where she had to write a monologue on non-violence.  The teacher appreciated her perspective, and I think it speaks to the long term effects of rare disease, and chronic illness.

I’ve added nothing below…

“A physician’s guiding maximum is non maleficence. Non maleficence means ‘to do no harm.’ And, I guarantee you that screaming at an 8-year-old and burning her neck, all while sticking needles through it, qualifies as the opposite of non maleficence.

 

Then, I was a scared 8-year-old who just found out she had a rare genetic disorder. Now, I’m a 14-year-old with PTSD and a rare genetic disorder that has caused a lot of hell in my life and is never going away.

 

As I look back at this biopsy, I realize many things. One, I’m positive this first medical trauma led me to be fearful of all the medical challenges that have befallen me. Also, I realize that my deathly fear of needles and my PTSD originated on this day.

 

If this doctor had used a non-violent tactic during this procedure, which isn’t pleasant anyway, then maybe my journey would have gone a different route. Maybe I wouldn’t to this day walk into a doctor’s office, see needles, and have my heart jump into my throat.

 

People don’t realize that actions that may seem small to them can have a big effect on someone’s life. As I think back, I realize that if this one doctor had practiced non-violence, then my preconceived notions of pain and fear every time I walk into an examination room might not exist.”

#beatingcowdens

Sometimes GOOD Things Do Happen…

Sometimes really GOOD things happen.  And when they do it is just such a jubilant feeling of gratitude and relief.

In October I wrote at length about Meghan’s struggle with PTSD and anxiety.  I wrote in the blog linked below about our commitment to obtain a service dog.

A blog outlining Meghan’s journey towards a service dog.

When we made this commitment it came with an enormous price tag.  It came after two of her doctors strongly encouraged the decision.  It also came with a determined sense of urgency that we would do whatever was necessary to make this a reality for her.

After searching, we interviewed with, and contracted with Medical Mutts.  We were drawn here because of their commitment to rescue their service dogs.  We currently love 2 rescues, and a third spent several wonderful years as a key part of our family.  We believe strongly in their mission.  We put the deposit for the dog on our credit card, a total leap of faith that was so necessary at that moment when she needed HOPE.

Meghan had weighed out the pros and cons of a service animal.  She had overwhelmingly decided on the pros.  And, while we know there will be bumps in the road, her father and I trust her instincts.

The wait time for a dog can be a year.  We had to get her into the system.

Then we paused and wondered how on earth we were going to manage the cost of obtaining a fully trained service dog from Indiana, with costs including a week of lost wages, air fare, hotel, and food while we were there.  We knew we needed help.

We reached out to local charities and were directed first to ECHO –Emergency Children’s Help Organization  

Previously, I had an idea they existed, but I had no idea we would ever need to ask them for help.  The whole act of asking for help is humbling.  But, if anything can humble you, it is the desire to provide your child with what she needs.

When I spoke to Gina she was friendly, helpful and calm.  She spent so many different sessions on the phone with me as I drove her wild with questions.  The application was intense and comprehensive, but I understood why.

With time and patience I was able to deliver her a completed application close to the end of November.  When I submitted the application, I had complied a list of other places we would apply to once they decided if they were going to grant us money.  I had never done anything like this before.

Through the process I was able to compile a history of Meghan’s charity work around the community.  I was proud to be able to attach a document detailing her work.

The executive board at ECHO was presented with Meghan’s case awarded her a grant that exceeded my wildest hopes and dreams.  With one phone call Gina was able to tell me that the balance of the dog would be paid in full, and there would be stipends for the travel to Indiana, the lodging, the transportation and the food.  In short, we were told to focus on Meghan.  The financial burden of the dog she needs so desperately had been lifted.

I have no doubt that Meghan, once she feels well again, will return to the charitable end of things, fundraising for PTEN disorders, and for those less fortunate.  It is part of her heart.

Right now, we have HOPE to carry us through some difficult times.  We have HOPE and eager anticipation for a dog that will become her best friend.

HOPE right now is spelled ECHO.

Please, if you’re inclined to support a quality organization – visit their website and consider a donation.

Emergency Children’s Help Organization – Donation Page

We will wait for the new dog anxiously in HOPE and GRATITUDE.

Forever,

#beatingcowdens

More questions than answers…

 

I haven’t written regularly and it is wearing on me.  I keep putting things in front, waiting to be ready, to be finished so I can focus.  Except life is really busy.  And it keeps getting busier.  So, while I’m really dating myself…


While I will never ever possess even a fraction of Ferris Bueller’s 1980s spontaneity, I am constantly working on this reminder.  I’m a work in progress.

Today we stopped.  We sat together.  We watched a movie.  We enjoyed each other.  It was fun.  I need to remember to do it more often.

I find myself struggling to keep the story together, while respecting the privacy (she does preread every post before they publish) of my teenager, and maintaining the authenticity of this journey we are on together.

I always try to be positive, and to put a positive spin on everything.  It’s how I cope.  It’s how I press on.  But, it is the same reason it’s been so hard to write.

The cold hard reality is that even when we are conscious of our many blessings, sometimes having a rare disease, THIS rare disease, really just sucks.  And, as much as you work to not have it define you, it becomes so intertwined with who you are, that it can become difficult to tease the two apart.  In the 6 years since our diagnoses she’s, gone from 3rd to 9th grade.  Those are some pretty formative years.

The struggle to stand apart from the disease that takes so much of your time and energy is real.  As a teen the level of self-awareness is naturally high.  The fear of judgment is one we can all remember.  The desire to stand alone, stand apart, and fit in, while not compromising yourself is one I remember as if it were yesterday.

My girl is strong.  She is physically strong, as she recovers from countless surgeries, and fights her way back into the pool time and time again.  She endures physical therapy.  She navigates countless flights of stairs, and is constantly challenging herself to do more.

She is mentally strong.  She has a work ethic that is impressive, and grades to back it up.  She reads.  She questions.  She thinks.

She is morally strong.  She has ethics that often impress me, and she will not step away from who she is, even for a moment.

She is emotionally strong.  She refuses to stay down, no matter what life tosses at her.  She handles stress, disappointment, and struggle, with a poise many adults I know are lacking.

She is strong.  I know she is strong.  Anyone lucky enough to meet her knows she is strong.

She also suffers with PTSD, and severe anxiety.

I see no conflict between her being strong, and suffering.

I watch the age of diagnosis for PTEN mutations getting younger.  I see in this blessing and curse.  It is a wonderful thing to have the mechanism by which we can survey and protect.  It is also a difficult thing for an intelligent child to have to shoulder.

Clearly, her PTSD is PTEN related.  There are only so many surgeries, hospital stays, IVs, blood draws, MRIs and other medical dramas one can face before memories are haunting.

The anxiety- we’re working on it.

I have some theories.  And I will press until every one of them is shot down, or validated.  Her history indicates that she has always had some metabolic issues.  Some were first addressed by an alternative medicine doctor beginning when she was 2.  I watched things resolve that I thought could never get better.

When her thyroid was removed in 5th grade, just shy of 4 years ago.  I knew then it was not a good time.  I also knew it was not our choice, as the recent biopsy result with 19 nodules, 5 of them suspicious for malignancy, prompted the endocrinologist at the major cancer center to force the total removal.

Fortunately, it was a benign thyroid.  However, that thyroid, no longer in her, now needed to be replaced synthetically.

I was 20 when I lost half of my thyroid.  That was hard.  This, well, it was just unimaginable. Because, anyone who understates the importance of the thyroid for every single function in the body, in my opinion is under-informed.  The endocrinologists are trained to look for one number on a piece of paper and make every decision based off of that number.  Except, we are people.  We are individuals.  We are not numbers.

It took just shy of 2 years before even that number, the TSH (Thyroid Stimulating Hormone – which by definition should not IMO be the “go to” number in someone with NO thyroid to stimulate) stabilized.  It also required a change of endocrinologists to get one to listen to me practically scream that her body was not converting the synthetic T4 to T3.  I may not have been a good chemistry student, and I may not fully understand WHY she does not process synthetic anything very well, but I confidently know it to be true.  This new endocrinologist was willing to give a low dose of T3 a try alongside the T4.  Finally the “magic” number stabilized.

Looking back I believe I was lulled into a false sense of security.

There was so much going on those years.  Middle school is tough for every student.  Factor in 7 surgeries in 3 years and its easy to see where things got complicated.

Looking back again, maybe I should have seen or thought… but there really was no time.

Excessive menstrual bleeding – nonstop for months, led us to an adolescent gynecologist.  That led us to a pelvic ultrasound, which subsequently led to a finding of “abnormally thickened uterine lining.”  The D&C pathology showed cellular irregularities, highly unlikely in her then 12 year old body.  But, we live as the “highly unlikely.”

Even as we were nudged towards hormones, I should have seen.  But, it’s easier to see in reverse.

The need for hormones to thin the uterine lining was non-negotiable I was told.  The IUD was an unacceptable solution to both of us.  So, she was given progesterone.

The medication is pure evil, I am convinced.  She handed me the pill bottle one morning and told me to get rid of it.  She was done with it.  I shudder at what could have become of things if she did not possess the inner strength I spoke of earlier.  Her level of self-awareness is eerie at times.  I am grateful.

So, we went a while with nothing.  And the body began to act up again.  This summer we agreed to try a birth control pill.  And, still, several changes later, things are not where they should be.

Most doctors want to make all sorts of sweeping generalizations.  They want to put everyone in a neat box.  Life is messy.  Rare disease life is RARE by definition.  When you are 1 in 250,000 you just don’t fit in the box.

I first noticed the anxiety increasing in middle school.

“Middle school is hard for everyone…”

The PTSD diagnosis finally came in May of this year.  But, I knew even then it wasn’t the whole picture.

This summer we almost cancelled Disney.  The pain from her periods had become intolerable, totally crippling her.  I called the gynecologist in desperation.  She was glad to hear me finally agree to the birth control pill.  I was desperate and hesitant, the progesterone nightmare was not lost on me.  It was the classic “rock and a hard place” story.

High School started out a little tumultuous.  The school she thought she’d attend underwent major changes over the summer.  She ended up relocating a few days into the school year.  But, she loves the new school.  The kids are nice.  She has more good teachers this semester than in 3 years of middle school.  The high school swim team was strong.  So why was the anxiety quickly melting into full scale panic attacks?

She works so hard to keep it all together.  She tries to keep it hidden.  She is so aware.

The panic settled back into general anxiety, but that anxiety spread to just about everything.

In December I adjusted my work day through FMLA to be able to pick her up at the end of every school day.  We spent a lot of time working through so much.

And somewhere in the middle of working through all of this, as people were so quick to offer medication for anxiety, I had some thoughts.

Why had the gynecologist and the endocrinologist NEVER spoken about interactions between their respective medications when both were prescribing hormones?

Simply because her lab tests for thyroid function remain in the laboratory range, there was never a question.  No one noticed this actual human being in front of me is struggling.

Why are we so quick to write off the unusual as impossible?

Why won’t we try anything to keep a bright, articulate, in touch 14 year old OFF as many medications as possible?

What if her T4 to T3 conversion, which was always a problem, was masked and not solved by adding a synthetic T3?  What if this anxiety has been building for all these years, and exploded at the insult of additional, yet necessary synthetic hormones?  What if the answer is harder than adding more medication?  What if it will take research, theories, and some “out of the box” thinking?

How do I convince them she’s worth it?

While my PTEN Facebook friends are sending me article links, I am composing my thoughts before writing a more organized, clinical version of these questions to her doctors.

All of this while seemingly insignificant head congestion is cramping her style.  I am not sure exactly where it fits in.

The ENT ordered an MRI of the brain to check the sinuses.  Turns out the sinuses are clear.  Except there was an incidental finding of a brain lesion 9.5mm of undetermined significance.  The new neurologist is confident its not a problem, but we’ll have a follow up MRI on February 20th.

In the mean time – no one will touch the congestion other than to tell her it’s “anxiety.”

She deserves better.

So, we will press on.

One year ends and another begins.  We’ve grown, we’ve learned, we’ve laughed, we’ve cried.  Yet still there are more questions than answers.

I have a feeling that’s pretty much how it will be.

This is life

#beatingcowdens

 

 

 

Invisible Illness – Sometimes We ALL Need Help

The day starts with me laying in my bed, trying to wrap my mind around the fact that it is time to face another day.  I lay there a few moments.  My heart rate begins to rise.  I feel the familiar ache and throb in my legs, and I quickly calculate the number of hours until I can re-visit my bed.

On the days I can move fast enough, I take a quick shower before I undertake the 10-15 minute process of waking Meghan.  Please, save the judgment that she is 14 and should be waking herself.  You’re right.  Except by the time I get to the top of the stairs there are several alarms sounding simultaneously.  She would if she could.

Waking her is no easy task.  Her body, so deeply fatigued by her daily physical and emotional battles, resists breaking those last few moments of cherished rest.  Never enough.  All teens are tired.  I get it.  I don’t know for sure that YOU get looking into the eyes of a 14 year old, bright, compassionate, articulate, and full of promise, as she pleads for it not to be morning.

The two of us together are some pair in the early hours.  My body aches but by the time I get through the shower I can usually shake some off.  I am also 30 years her senior, so living in my mid-forties, I can expect some normal aches to start to take hold.

Like so many things, Meghan’s life is mine amped up.  I was always tired, but didn’t know “train wreck tired” till the attempts to balance my thyroid in my mid-twenties.

She was 10 when that journey began.  It is not right yet, although a competent, sensitive endocrinologist watches closely.  Synthetic anything gives her body a problem.  Always has.

Adding in the synthetic hormones to contend with the suspected start of endometriosis has added a layer we need, but didn’t want.  The pre-cancerous tissue in the uterus is likely to be helped by this step, as well as excruciatingly painful periods, but like all things it is not without cost.

She drags her body down the stairs, walking crookedly to contend with a back, or a hip, inevitably and almost constantly displaced by a full foot size discrepancy.  Bi-monthly chiropractic visits put things back in place, for as long as they last on her 5’8″ frame.

As she travels the two flights down to her bathroom, there is an internal, and audible triage of the aches of the day being sorted.  It’s agonizing to watch and listen to.  You see there is never a day where everything feels well.  There is never a day where she is just tired.  There is never a day that she wakes eager to face even the most exciting events.

 

There is a part of me, a small quiet part of me, that sometimes allows myself to believe that maybe she’s playing games, exaggerating, or trying to make me insane.  And then I think quite simply, why?

Why would she WANT to hurt, or have an upset stomach, or be in pain.  She, who is eager to please her parents, and everyone she meets, would not want to be in internal turmoil or conjure up ailments.

So my mind does it’s thing as well.  “How many days has that been bothering her?”  “Do I need to take her to a doctor?”  “Can they really help anyway?”  “Is anything lasting too long?”  And so on…

And somewhere in the middle of this, as the moments kick past 6, I have to push.  We have to be out the door in order for her to be at her 7:25 period 1, and for me to be in my classroom in time to set up for my 8AM students.  There is really no time to deal with any of it.  We simply need to press through and get out of the house.

We do a lot the night before.  Lunch is packed, swim bags are packed, clothes are picked out.  Homework is always in the backpack.  Mornings are not for things that can be avoided.

I have to admit there are mornings where it has gone very wrong.  There have been mornings where I have not felt well myself, and my patience with the multitude of issues required to just get herself dressed and ready are forgotten temporarily.  I am not proud of the mornings where the clock passes the point of panic and I evolve into a screaming shrew.  But, this is about honesty, and honestly, it happens.

Smooth or not, we find ourselves in the car on the close to 20 minute ride to her school.  And that is where it gets trickiest.

Months ago Meghan was diagnosed with PTSD – Post Traumatic Stress Disorder, secondary to medical trauma she has endured in her young life.  That PTSD has been exacerbated through the years through a variety of triggers she works to manage.  But, many days it seems her “fight or flight” is broken and she is wound into a high state of awareness, of EVERYTHING.  That means every human interaction, every test, every assignment, every competition, every audition is just amped up.  Sometimes the volume is so loud it can feel almost crippling.

And, yet still, as we work daily, she has to get out of my car and walk into that building alone.  Some days are easier than others.  Some days, I’m tempted to snatch her and drive far away where I can keep her safe and calm.  But, she’s not 4 – she’s 14.  And, she has to go.  She knows it too.  So she does.

It’s not about the people anymore.  Although it was for a few years.  Now, thankfully, it’s not.  The people are kind.  They students are friendly, and while no one is friends with everyone, she is after only about 20 days, building positive relationships with peers, her swim team, and many adults.

So why?  I’m not sure.  And I’m not totally sure she is either.  That’s why we’re working on it.

But, there are theories.

Post Traumatic Stress Disorder is not rare.  But, Cowden’s Syndrome is.  And in my child the two are intermingled.  The relationship between chronic medical issues, 18 surgeries, tests, scans, hospitals, isolation, heightened anxiety, the need to self-advocate, a lack of trust for the many medical professionals who have handled things wrong, and the isolation and overwhelming feelings this can cause is just the tip.  Coupled with generally feeling off, having a super sensitive stomach, relentless seasonal allergies, and being an athlete who simultaneously loves her teams and fears competition can create consternation.  This is the very tip of what I know to be a Titanic sized iceberg we are working on melting.

She likes her school.  She likes the people.  She likes the environment.  And yet there are days it is a struggle, a moment by moment struggle to make it.  She hurts.  She pushes.  She is stubborn.  She is strong-willed.  And for as many times as those characteristics cause me to want to bang my head repeatedly against a brick wall, are as many times as I thank God she is that way.

She likes to swim too.  She likes to swim for her school.  She likes to swim for her 12 month team.  She enjoys feeling strong, and having a body that reflects her hours of training. I am grateful that she is an athlete.  But, the battle to get into the pool when every piece of you just hurts, and you want nothing more than to be in your bed is a battle her coaches or her teammates do not fully see.  I mean they see the performance anxiety, which is WAY deeper than what it seems to be, but the rest, the full deal is carefully and intricately hidden like so much else.  No wonder she is tired.

 

We are working on it.

Every day is a battle to get through the day.  Sometimes physically, and other times mentally and emotionally.  Yet, day after day, it gets done with a grace that often blows me away.

Every house holds secrets.  Private, messy moments that are not shared with the world.  We are not the only ones, and we are not oblivious to the moments others must hold close to themselves.

Collectively, we all need to stop judging.  We must stop imagining their life is perfect because it looks so on facebook, or instagram, or snapchat.  We need to be kind.  We need to go back to the basic rule that “If you have nothing nice to say – don’t say anything at all.”

We need to not profess that we can fix others problems, or make ourselves feel better by offering “quick” solutions.  It is hard to watch others in pain.  It is not easy to accept that sometimes there is nothing we can do besides be a friend.  We need to acknowledge pain, and struggle as real without giving in.

In this house weekends are still about survival.  They are about recovery.  They are about storing up a ‘spoon’ or two so that we can use them in the coming week.

One day I’d like us to have a social calendar.  I’d like to get out as a family and make some memories on a sunny October day.  But, today was not that day.  Today was swim practice and vocal lessons.  That is what we could do.  Today.

The evening winds down and we are faced with the reality that sleep will need to happen again.  Sleep is tough times.  Not for lack of fatigue, but for a teenagers over worked mind.  We are working out a system.  We are seeing some progress.  The struggle is real.

We are working on it.

This week we contracted with a company for a Service Dog to assist with the PTSD.  It will be one of many interventions we will use.  We have sent a deposit.  The process has begun and can take up to a year.  We are hoping it will be sooner.

If you have read this far, and you have real suggestions for grants we can apply for to assist in raising the cost of this dog, your assistance is valuable.

We are not looking for an analysis, or reasons why we Meghan might NOT need a Service Dog.  We have medical professionals encouraging this.  We will deal with logistics as the dog’s arrival looms.  In the mean time, we are working purely on fundraising.

The organization we are connected to is http://www.medicalmutts.com  They are an accredited business that we researched extensively.  When the dog is ready we will need to spend a week in Indiana picking it up.

The decision to make this move was based on many factors, but it was guided by Meghan.  She has researched.  She has thought.  She has read.  Her father and I have learned to trust her instincts.  Undoubtedly, that is one of the reasons we have come so far.

Looking forward to hearing your encouraging, helpful comments –

We remain

#Beatingcowdens