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

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

 

 

 

delete

Don’t you sometimes just want to hit the delete button?

We were going through vacation photos and I was struck by how easy it was to eliminate images that we found unflattering.  We were able to simply click a button – and they were gone, for no one else to ever see.  Eventually our only memories of the trip would be reliant on the images that remained, so in some ways it was almost like those unflattering moments never happened.  Right?

I love my social media accounts.  I do.  But sometimes I scroll through feeling a bit down, inadequate and lonely.  Everyone looks so happy.  Everyone is surrounded by friends.  Everyone’s house is clean.  Everyone is taking wonderful vacations.  Everyone is resting in their pool on a weekday afternoon…

Then I realize I do the same thing.  No one wants to see a picture of my unmade bed, my tears of frustration, or the times when the family doesn’t really like each other too much.  No one wants to hear videos of me bickering with insurance companies, or dealing with the day-to-day realities.  No one wants to know how often some type of issue simply keeps us house bound.

I started this summer as I do every summer, full of hopeful anticipation that it would bring health, and rest, and time to read, and do lots of nothing.  And, like most of the summers before, that is not at all how it turned out.

I could insert a photo of my unread books, or closets that never got cleaned out, or the files that never got shredded.  I could flash you a shot of my EZ Pass statement, for the countless trips to the doctor… you get the idea.

As we journey through this world of rare disease, and chronic illness together, I use this blog to keep my perspective straight.  Yet, some days it’s hard not to feel like the plate is just a little too full.  And somehow, some way…

This summer Cowden’s Syndrome took a run at us- hard.  The knee has been, and continues to be a work in progress.  The isolation it causes is hard to describe.  The sinus infection caused chaos because the medications wrecked a sensitive stomach.  The knee medicines added fuel to the fire.  Renegade hormones took their toll too.  We are still deep in this journey to figure out PTSD and its manifestations, and ramifications, and where we all fit in.  Cowden’s Syndrome has done some damage.

Yet, despite all the things we want to delete from the summer, there were some beautiful, simple, and just fun times.  There were friends that visited.  There were connections with dear old friends, and some new ones too.  There was a fun birthday party – something we have not had in YEARS!  And, there was Disney… still magical.

With all this on my mind as I went through the vacation pictures, I opted to save some that in previous years I might have deleted.

It was late one night and Meghan wanted to go back to the Magic Kingdom.  I took her back myself.  We made our way up main street and headed to “Dumbo” the first ride she ever rode in Disney – 10 years ago.  We waited on line, and rode our elephant side by side.

I’ve never been so pleased to take a “selfie” in my life.

Then we used a Fast Pass for the Seven Dwarfs Mine Train.  Three years ago I didn’t even ride roller coasters.  Now, I’m so used to the ones in Disney I don’t give them a second thought.  As we headed over the first hill the sky lit up with the fireworks display over the castle.  We were in awe.  I think it will probably be one of my most magical Disney memories ever.  This picture, although not  flattering, captures that moment so well.

Most Magical Moment

There were many moments this summer I wanted to “delete.”  But, then there were others.

So in an effort to give you a little more “real” and a little less “facebook fancy” I decided to keep these.  And, I even decided I like them.

Because life is not pretty.  Sometimes its downright nasty and ugly.  Most of life is not us in our best clothes, and hair.  Most of life is sweats and sneakers… that are hopefully clean and matching.  And if we delete all of that, and spend all of our time looking for the perfect, well, I think we’ll miss some magical moments.

Cowden’s Syndrome is not going away.  Plans are going to get messed up and changed at inconvenient times.  There are going to be lots of housebound days full of isolation and loneliness.

But, as I go through my camera roll, I am going to concentrate on deleting less.  I am not going to judge a picture by a random perfection scale.  I’m going to judge it by the magic within.

We asked a Disney employee for a quick shot on the iphone…

And with this girl, I will learn every single day.  I am just so lucky to be her mom, and I won’t delete any of it simply because it’s hard.

We remain forever

#beatingcowdens

The Comeback…

“…There is no mountain you can’t face

There is no giant you can’t take

All of your tears were not a waste

You’re one step away…” Danny Gokey

We listen to a good deal of Contemporary Christian music.  There are other tastes among us, but often, especially in the car – we listen to this.  It’s been a few years since we’ve had a church where we all felt comfortable and at home, although we possess strong, deeply rooted faith.  This music helps keep us focused when things can otherwise seem blurry.

This particular song surfaced a few weeks ago.  Meghan was battling to make a comeback from knee surgery 7, and seven was NOT a lucky number.

When you’ve been through the operating room 18 times and it’s still a week before your 14th birthday – you can call yourself somewhat of a professional at recovery.

We left the hospital with our list of directions.  We went to the surgical follow-up.  We scheduled PT.  We even held an extra week before restarting swim.  There were crutches for a very long time – used responsibly.  So, when she had done everything right, and her body decided to push back – hard, she was understandably angry and very frustrated.

No one really had a solid explanation for the fluid that overtook that knee almost 5 weeks post operatively.  But, there never really is a solid explanation.  I’d like to say we’re used to it.  But, I don’t like to lie.

There were more crutches, and more PT with the BEST PT in the whole wide world.  (We LOVE Dr. Jill – because she works on the WHOLE kid.  She gets that they are more than the body part giving them trouble. I know of NONE quite like her.)  There was increase in strength and range of motion.  There was a return to (half) swim practices.

There has been diligent icing after swim.  There has been stretching and strengthening because, quite frankly, she WANTS to feel better.

We joked around during the month of June, how nice it would be if we could make July a “doctor- free” month.  We longingly imagine the same scenario every year.  What if summer could be time to relax?  What if we could take day trips?  What if we could come and go, and rejuvenate?

I just counted 20 medical appointments between us over the last 31 days.  There are 2 more tomorrow.

Chronic illness is a real drag at any age.  When it happens to a child or a teen it makes everything that is already hard about growing up – even more of a challenge.

When you are in an almost constant state of recovery, you can find yourself tired.  Fighting so hard just to get back to where you were can make you feel like a hamster stuck in a wheel.

Chronic illness, constant pain, surgical recovery, ongoing surveillance, and all the other “fun” things that accompany Cowden’s Syndrome – or any other “it’s sticking around FOREVER” illness can leave you wiped out.

It’s hard to build relationships, friendships, or even a social group when you aren’t able to do so many of the things people take for granted every day.  There are days you quite simply run out of “spoons.”

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

But, in life there are more times than not that we have choices.  I try to model for my daughter, but so often she models for me.  You can choose to sit alone.  You can choose to let pain, fear, anxiety and frustration take hold.  You can choose to be sad.  You can choose to be mad.  Or you can realize that life is hard.  Everyone’s life is hard.  Life is also full of blessings.

When you realize that this is your life, and you decide you’re going to make the best of it- that’s when you dig in. You climb up that mountain, one step at a time…

I admire many things about my daughter.  She is not perfect – neither am I.  But in her soul, there is a “Never Give Up” attitude that permeates all things.  There is a constant quest for equity and justice, not just for her, but for all she interfaces with.  There is a compassionate need to help others.  There is a desire to be successful in spite of her circumstances – not because of them.

She always says she loves to swim because regardless – she has to meet the same time standards as everyone else.  Somehow it makes each comeback a little sweeter.

No one else would likely know, or realize, or remember.  But, we know.

First year on the high school team.  The season starts right after school.  She’ll be ready.

That’s why we will always remain

#beatingcowdens

 

“…There is no mountain you can’t face

There is no giant you can’t take

All of your tears were not a waste

You’re one step away…” Danny Gokey

This video is worth your time…

 

Danny Gokey – The Comeback 
After a season of nightfalls and pushbacks
After the heartache of wrong turns and sidetracks
Just when they think they’ve got you game, set, match
Here comes the comeback
Just cause you laid low, got up slow, unsteady
Don’t mean you blacked out or bought out you’re ready
Just when they think there’s nothing left running on empty
Here comes the comeback
(chorus)
This is your time, your moment 
The fire, the fight, you’re golden
You’ve come so far keep going
Here comes the comeback, comeback
You feel the lightning, the thunder, your soul shakes
Under the roar of the heaven, the tide breaks
And from the ashes you will take your place
Here comes the comeback
(chorus)
This is your time, your moment 
The fire, the fight, you’re golden
You’ve come so far keep going
Here comes the comeback, comeback
There is no mountain you can’t face
There is no giant you can’t take
All of your tears were not a waste
You’re one step away
Just when they think they’ve got you game, set, match
Here comes the comeback
(chorus)
This is your time, your moment 
The fire, the fight, you’re golden
You’ve come so far keep going
Here comes the comeback, comeback

A Perfect Storm

 

Sitting, sopping wet, in the middle of the ocean, in your small row boat.  Your feet are wet.  Your fingers are wrinkled.  You are cold, exhausted, and often frightened.  There is no access to the weather channel.  Your connections to the real world have all but vanished.  You focus every ounce of your strength on keeping the boat afloat.

You try to maintain a sense of calm, but your insides are turning worse than after a serving of spoiled mayonnaise at a summer barbecue.

There are moments when you think.  Hope.  Pray.  That it will settle down.  There are moments when you dream of enough sunshine to shed your wet clothes and warm and dry yourself.  There are moments when you can almost see what appears to be a friendly ship in the distance.  And in those fleeting moments you even remember what it felt like to socialize, to chat, and to laugh – about every day life.

Your faith reminds you that Jesus is in the back of that boat.  You know better than to let your insecurities wake Him.  You know in your core that you are loved, and protected.  

And then another wave crashes over the side.  You can not put your hand on the oar.  You lock eyes with your husband in front of you – always with you.  You put a hand on your girl, sopping wet beside you.  You strengthen your resolve.  

I have been fading out of touch these last few months.

I love writing.  It is my therapy and my release.  It clears my mind and cleanses my soul.  Except there is a balancing act to be had -tenuously protecting privacy while fulfilling what we believe is our calling to share a raw, honest view of our lives “Beating Cowdens.”It is hard to realize breaks in time.  Things blend together so readily it is hard to discern where one event starts and another stops.  There is only rarely a pause between medical appointments, some for the same issues, some for new ones, and others for maintenance.  Some appointments are mine, and some belong to Meghan.  All but a few require hours and hours of travel.  It safe to say they cost us on average 5 hours a day.  But, those 5 hours are not of my choosing.  I can’t say, decide to get up at 5 – deal with the appointment and be ready to start the day at 10.  That’s just not how it works.  Most are scheduled somewhere between 10 and 3.  That means by the time we get home, there isn’t much time to do anything.  Or, we spend the day waiting to go – so there isn’t much to get done.  There are no summer day trips planned.  Making plans to catch up with friends is something we avoid – because we so often have to cancel.  The cycle continues.  There is just getting by.  And some dreams that maybe we can get to the beach one day this summer…

Somewhere early this year Meghan started to be done with it all.  This is not an easy place to be in by any means.  She is a month shy of 14, and this is her journey for the REST of her life.  Teenage years are nothing most of us would want to revisit.  The extra complications of finding your way amidst a chronic sense of isolation (the knee precludes too much walking, it prevents basic sports games most of the time, it leaves the competitor side-lined too much, the allergies mean the food has to be different, the pain is unusual and constant and managed in some “unorthodox” ways, the number of times she has to say “no” because she has an appointment, an ER visit, or something else medical is astounding and limits the invitations, ETC., ETC…) coupled with an understandably defensive posture, and a desire to just BE, can make for some lonely times.

 

Her sleep patterns went off the charts some time in February.  My sleeper just couldn’t fall asleep.  She’d lay still for hours.  Her pattern was restless and fitful.  I watched my girl pull away from her swimming.  I fought to push her.  Even after her best meet ever in March – I could no  longer get her up to a morning practice.

Meanwhile, I never made connections that are so clear now.  In January we were released from the Interventional Radiologist who had completed the 5 embolizations over 6 years on the AVM in her right knee.  He released us to the care of the orthopedist who had already performed an arthroscopic lateral release in 2015 to help shift her patella into place.  It had begun to slide as a result of residual damage from small amounts of lingering blood in the knee.  By early this year the warning signs had begun to develop that the knee was off.

A visit to the orthopedist in February confirmed what Meghan undoubtedly knew.  He offered her the chance to try to intervene conservatively and put a brace on to hold the patella in place.  Maybe it could “convince it” to move on its own…

She took it in stride, like always.  We bought leggings to accommodate the giant addition to her thin frame.  She dug in and pressed on.

While all this was going on the chronic congestion that had begun in November worsened.  The ENT noted swelling, but called it allergies, the obvious choice this season.  There was a nasal spray added, and a week of a decongestant.

Attendance in school started to be a struggle.  There was fatigue.  Low grade infections.  There was pain.  So much pain.

The chiropractor visits became more frequent.  The leg length discrepancy made more noticeable by the limping to accommodate the brace on the shifted knee cap.

My surgery in March helped nothing.  There was so much vocal rest required it tossed us all on edge more than normal.

Swim practice was lessening.  Focusing on school was a chore.  Sleep was becoming near impossible.

The breathing worsened.  We justified the “worst allergy season ever.”  Her voice started to feel the effects of this chronic congestion.

In April the inevitable was spoken.  The knee would need a repeat of the 2015 arthroscopic lateral release.  We wanted to schedule it immediately.  The first available day was her the opening night of her school play, a play she had earned the lead in.  The next opening was almost a month later on May 20th.  We would have to wait.

The pain increased.  The frustration increased.  The sleep, and subsequently the desire to swim decreased.

The “Coaches Award” at the swim dinner made her feel honored.  She respects her coach so much.  But, she couldn’t reignite the fire.

The surgery in May went well, even though I had worried with the increased congestion that they could not put her under anesthesia.  But, it was fine.  She went through the 2 hours like a seasoned veteran.  That made number 18.

Rehab was tough.  The pain was significant.  But, it faded gradually.  Our favorite PT began to work her magic.

She got around on crutches, figured it out and made it work.  Again.  Always.

She got off the crutches exactly in time for 8th grade prom.

 

She was healing.  Physically.

She made it back into the water.  She swam the 18th of June, and the 19th too.  She started to talk about it in a more positive way.  The 20th was awards night for 8th grade.

My 8th grader was named Salutatorian for a graduating class of almost 400.  She received several academic awards that night. I sat in the auditorium with the last few months, and years running through my mind.  People knew some, but no one, not even I knew ALL of what it took to be her, every day.  And here she was, not only doing it, but excelling at it.  It was a good night.

Until she came home, and put up her feet.  And there, on the side of her surgical leg was a 4cm x 6cm mass, with rapidly increasing swelling.  Breathing, we strategized.

We took the crutches back out.  I stayed up most of the night making sure there was no bleed on the knee.  I sent her to school the next day to get her cap and gown and yearbook “like everyone else.”

Then we headed to the surgeon.  His nurse practitioner sent us to the ER.  They could not get their acts together and after 7 hours discharged her on crutches with a script for an MRI.

 And an IV that went unused…

She was to be “minimal weight bearing as tolerated.”  They wanted her back at the doctor that Friday.  I finally spoke up and said no.  She was going to her graduation Friday – NOT tainted by a medical appointment.  We settled on Tuesday.

However, with no answer, she was to graduate on crutches.  So, a friend suggested if she had to use them, she should “own” them.  My husband spray painted them white.

Sunday we drove to Long Island for that MRI.  The one I knew they would not do locally.  30 miles.  2 hours and 15 minutes home.  We caught up with some friends that day.  Good thing.  We needed them so badly.

As she was in the MRI machine for her knee she told me something was “blocking” her nose inside her head.  If you’re a Cowden’s Mom – you just went to tumor as fast as I did.  My head spun.

Monday the ENT was able to ease that worry.  He told us it was a mass of infection.  That likely she had had a severe sinus infection for 8-10 weeks.  He anticipated 14-28 days on biaxin to get after it.  That was alongside a short course of oral prednisone.  He nose was so inflamed there was almost no air passing.

A sinus infection usually has me out of commission in about 3 days.  I just shake my head in awe sometimes.

Tuesday the 27th we trekked out to the surgeon again.  The MRI showed the mass to be a huge fluid filled pocket.  There is also fluid all through the knee joint.  He looked, and looked.  He has done many surgeries.  He is skilled.  He shook his head and finally told us he did not understand.  He had “never” seen this before.  And now we had to wait for her knee to tell us what to do next.

Cancel camp.  No Drama Camp she had loved so much.

Postpone PT indefinitely.

No swim practice yet.

And there we were – facing another summer…

But somehow, all of this seemed to weave together.  The perfect storm.  The knee, the sinuses, the sleeplessness, the fatigue, the low-grade illnesses, the sinus infection…

Somewhere through all this we spent a few visits with a brilliant doctor who diagnosed Post Traumatic Stress Disorder.  PTSD.  Like with the soldiers, or other trauma victims.  “Secondary to significant medical trauma” she said.

It all made sense, except the “post.”  There is nothing really “post” about this ongoing scenario.

That, and the Salutatorian thing.  As impressed as I am – I am still in awe.

The journey continues, and we will above all things remain…

#beatingcowdens

It’s Not Over Yet…

Tonight my search for perspective was harder than it normally is.

Tonight I needed a glass (or two) of wine, some time alone in my office, and plenty of music.

And as the lyrics roll through my head in the eclectic mess that spans, Contemporary Christian, Classic Rock, and some alternative memories from back in the day, I somehow start to find myself again.

I am generally a very positive person.  I am able to find blessings in unlikely and hard to reach places.  I make a point of focusing on these things for so many reasons.  Primarily, I find it is necessary to be positive for my health.  While I don’t believe a positive attitude alone will cure illness, I do firmly believe a negative one, or a constant state of stress and worry can worsen illness.  We certainly don’t need that.

But, lately I’ve been frustrated.  I’m even a little angry.  You see – everything is NOT fine.

And I’ve been avoiding my computer because I’d rather write when my perspective is in its proper place.  One of the reasons I love to blog is because I can get right in my head by the time I’m done.  I can typically work through whatever is gnawing at me.

There are drafts in my folder.  Unpublished, unfinished work.  I’ve tried, but I’m struggling.

Logic leads me to retrace the obvious.

In our house the diagnoses came about five and a half years ago.  I was 38 and Meghan was 8.

In most of the people I’ve interfaced with who have Cowden’s Syndrome, their diagnosis is less than 10 years old.  I know there are others, but this is the majority.

There is a growing group of us who are parents.  Now, in my case, my diagnosis was made BECAUSE of Meghan’s.  But, in many cases the opposite is true.  There comes a point where the signs are either apparent, or subtle, and something prompts the formal diagnosis of PTEN Hamartoma Tumor Syndrome, in some form, in our children.

Anecdotally, we are not the only house where the syndrome seems to manifest worse a generation down.  This is a story I have heard many times.

There is a special kind of knot that forms in your stomach and lingers, forever, when you realize that you are somehow responsible, in an unintentional, yet undeniable way.  Your child has this syndrome because, even with a current estimate of a 1 in 200,000 diagnosis it is an autosomal dominant condition, which means that if you have the mutated PTEN gene, 50% of the time, it will pass to your child.

Between us, since Meghan was born in 2003 there have been 30 or more trips to an operating room.  On 18 of those visits I have watched my girl head into surgery.

And I know all the blessings bestowed upon us.  I know the beauty of benign biopsies, and the gratitude of legs that allow for walking when the alternative has certainly been possible.  I know the strength and resilience of my daughter, and the grace of God alone.  I know the grit of a child just out of her 7th knee surgery who understands the recovery process better than any PA she will meet in the surgeon’s office.  I know the feeling of bruises on my knees as I give thanks for my child who is ABLE to recover.  I get it.  I truly do.  I’m grateful.  I am.

But, you know what else?  Sometimes I get angry.  And, that’s OK too.

I’m learning that part of being able to be positive is allowing myself to FEEL and WORK THROUGH ALL the emotions that come my way.  Even the ones that hurt.  Even the ugly ones that don’t have flowers and rainbows attached.

This is reality.  This is our reality.  And I am not about comparisons.  I do not profess to understand anyone else’s reality any more than I could expect them to understand mine.  I do not use words like “worse” or “better” or “harder” or “easier” or “fair” or “unfair.”

What I can tell you about our reality is that 18 is too many surgeries for a 13-year-old girl.

I can also tell you there will be more.  For both of us.

Vigilance, a necessary reality to keep us in front of the astronomical cancer risks associated with Cowden’s Syndrome will lead to more surgery.  And we will hope and pray each is followed by a benign biopsy, or an encouraging word from an orthopedic surgeon trying to preserve a knee damaged by a mischievous AVM.

When I got my diagnosis, I was almost 40.  I was married.  I had a little girl.  I had a home.  A career.

When my girl received her diagnosis she was in 3rd grade.

Swallow that.

It doesn’t taste very good.

Cowden’s Syndrome is isolating.  In addition to numerous food issues, and immunological issues, and significant knee trouble (understatement of the year,)  there are SO MANY doctor’s appointments.  There are countless blood draws.  There are so many days I pick her up at school and we do ANOTHER 4-5 hours round trip in the car, traveling to NYC, sitting in traffic, parking, waiting, sitting in more traffic…

As connected as social media can help you be, there is a lack of connectedness that is inherent with not being there.  Being absent.  Being unable to go on certain trips.  Being unable to do the things kids your age can do…

When I was a child I always “knew” something was wrong with the ridiculous number of surgeries I had, but it was different.  It was not the same as knowing for sure that your genetic mutation was going to guide portions of your life whether you like it or not.

When you have one thing wrong, whether you break an arm, or have your wisdom teeth out, or your tonsils, people seem to know what to say.  When you constantly have something wrong, some type of surgery, or some type of recovery on the agenda, it gets harder for everyone.

People don’t know what to say.  So they don’t…

Cowden’s Syndrome can be very isolating.

What about our children?  What about our children who are being diagnosed younger and younger?  To some extent, yes, “Knowledge is Power,” but at what cost?

We are forced to make the logical choice for necessary screening appointments, and often surgery, while often having to skip social, cultural, or sporting events.

We are forced to say no to social engagements so often, that people forget to keep asking.

Our youngest children at diagnosis may not fully understand the scope of what is now their’s.  But, they will.  If they have a parent with the same syndrome they will watch.  Everything.  If they are the first in the family they will piece it together.  Really there comes a point there is no keeping it from them.  Then what?

I am blessed with a young lady who reads like a book-worm, and has a solid comprehension of people, personalities, and her environment.  I am left only with the option to tell her the truth.

Sometimes the truth gets stuck in your throat, burns a bit, or leaves some nasty reflux.  Yet, still that bitter pill is the only one we’ve got.

I sometimes wonder how different things could have been, if…

But it is my girl who stops me.  Without this diagnosis she knows I would not be here.  My breast cancer was uncovered by her diagnosis and that diagnosis undoubtedly saved my life.  Without Cowden’s Syndrome she knows she would have become someone different.  Someone else.  And that wouldn’t have been right.

While I don’t believe in a God who wants us to suffer, I believe in one who uses that suffering to allow us to become a better version of ourselves.

My girl started Junior High with a broken foot.  During her 3 years there she endured less than perfect social relationships (read, a few very mean children and my child who didn’t always have the patience to contend with teenage normalcy) and 7 surgeries.  SEVEN. Seven recoveries, and pre and post operative visits too.  She did that while holding an average of well over 95% every single marking period.  She did that while making enormous strides as a competitive swimmer.  She did that while learning that she had a the voice of a singer hiding inside.  She did that while performing in several productions, practicing after school for months each year.  She did that while spearheading 3 successful PTEN Fundraisers, essentially putting Cowden’s Syndrome in the vocabulary of our community.  She’s ending Junior High on crutches.  Unfortunate bookends, or a reminder of the strength and resilience of a young lady who refuses to be defined by her disease.

I am sometimes not even sure if she is aware of her accomplishments, as she is so busy pushing onward to stop and notice.

Who sets the example here?

I guess I need to stop hiding from my computer.  Perspective never really leaves.  Sometimes it just needs to be worked through.

This diagnosis stinks.  This syndrome is a real bear to contend with.  It is lonely and isolating and leaves little time to even see family, let alone friends. However, as the saying goes –

And that is probably the real perspective.

And almost as if perfectly timed, I found my title for this blog – as the Pandora radio plays..

“They are inside your head
You got a voice that says
You won’t get past this one
You won’t win your freedom

It’s like a constant war
And you want to settle that score
But you’re bruised and beaten
And you feel defeated

This goes out to the heaviest heart

Oh, to everyone who’s hit their limit
It’s not over yet
It’s not over yet
And even when you think you’re finished
It’s not over yet
It’s not over yet
Keep on fighting
Out of the dark
Into the light
It’s not over
Hope is rising
Never give in
Never give up
It’s not over…”

(It’s Not Over Yet – For King and Country)

#beatingcowdens

AHCA, High Risk Pools, and My Child’s Future

I am angry.  I am hurt.  I am worried.

I have stayed out of politics through the entire tumultuous 2016.  I have serious issues with many politicians.  I am not here to talk about them directly.  I am here to talk about an issue that transcends political party affiliation.  I will not engage in a debate about Democrats or Republicans, or the should have/ would have/ could have game that people like to play with each other.

This is far  more serious, and more important than any of that.  This is about my daughter.  It is about her life.  Her future.  And, it is about the lives of millions of American citizens, myself included.

I will concede that there are problems with health care in America.  I will even agree that healthcare the way it exists today needs change.  However, when I look at a situation that needs change, I think it through carefully.  I work through every detail. I weigh out repercussions and ramifications.

The Bill that passed the House today, in my opinion was put together in an attempt to score a “win” for our President.

When millions lose. No one wins.  That’s not just the math teacher in me.  That’s real.

Three years ago I was in a car accident.  It was a terrible situation, and I was T-boned at an intersection.  I will contend to my dying day that the truck that barreled through me was speeding so fast it never should have made it to me before I cleared the intersection.  I had the stop. I stopped.  He never saw me and it took almost a block, in a school zone, for his truck to finally stop moving.  Because the stop sign was mine, I was assessed with most of the fault for the accident.  It made me furious.  I was told speeding could not be “proven” despite the absence of skid marks.  The other 6 accidents that happened at that intersection in the months preceding were not helpful either.  In the end, I was grateful for my life.  I walked away and took the penalty on my insurance.  I paid that accident penalty for three years.  And, while it did not make me happy, I did it.   The accident penalty was annoying, but affordable, less than $200 a year.

The car accident happened once.  It might happen again, but it will not happen regularly.  I am 25 years driving, with one accident and no moving violations.  I have proven I am not a reckless driver.   I have control over that.  Full control, and I take my driving very seriously.

I also take health very seriously.  Unfortunately, there are aspects of my health I do not have full control over.  My daughter and I have a rare genetic disorder called Cowden’s Syndrome.  She is 30 years my junior, and at 13 and 43 we have seen the inside of an operating room close to 45 times combined.  Cowden’s syndrome causes tumor growth.  It carries with it an astronomically high risk of many cancers, most notable breast, thyroid and uterus.  It carries also significantly elevated risks of kidney, colon, skin, and other cancers.  Many of our tumors are benign.  Some are not.  The only route we have to long term SURVIVAL is constant surveillance.

Many doctors recommend surgery to remove things that are high risk.  Thankfully, that suggestion proved life-saving for me in 2012 when a “prophylactic” bilateral mastectomy revealed stage 1 breast cancer.  I was fortunate.

Two months ago I had surgery to remove a benign tumor from my vocal cords.  It was impairing my ability to breathe and speak.

In 16 days my daughter will undergo the 18th surgery in her young life – the 7th on her right knee.  Cowden’s Syndrome carries a high correlation to vascular malformations like the Arteriovenous Malformation (AVM) that grew in that knee.  After 6 embolizations to curtail the blood flow, she now deals with the repercussions of having blood lingering in the knee.  There is wearing away of tissue causing the patella to shift.  There is extreme pain, not just in the knee, but all through her body.  Her right foot stopped growing years ago, but the left one kept at it.  Now a full size apart,  different in length and width, her 5’8″ frame feels the repercussions with every step.  She is regularly at the chiropractor in attempts to minimize pain medication and keep her in alignment.  Pain medication caused such GI distress in 2014 that she spent a week in the hospital.  Cellular changes in the esophagus are not good in anyone.  At 10, with a condition that causes tumor growth, it was certainly another wake up call.  We gladly purchase 2 entirely different shoes every time she needs a new pair.  We are grateful she walks.

That is just the tip of what this child has endured in under 14 years on this earth.  She has had her thyroid removed with 19 nodules and suspicion of malignancy at the age of 10.  We still work to balance levels synthetically.  She had had TWO D&C procedures to eradicate suspicious tissue in her uterus.  She has had a lipoma removed from her back and vascular malformations from each palm.  She has lost her gall bladder.  She fights, stands up.  Moves forward, and gets smacked in the face again.

Soon after our diagnoses in 2011, another mom told me Cowden’s Syndrome requires vigilance.  I got it.  I am on it.  All the time.  And with the GRACE of God alone, we are walking the path the best way we can.

We average between 6 and 10 appointments a month between us.  The copays and travel costs are often daunting.  But, we are fortunate.  We have two good jobs my husband and I tell ourselves.  We have good insurance.

We are careful with every morsel of food that enters her body.  We eat largely organic and non-GMO to let her body use all its energy to stay healthy instead of fighting contaminants.  Even at that she is acutely sensitive to almost all gluten, dairy and soy.

We treat as naturally as we can, often incurring bills, as these treatments are rarely covered.  Yet, still we prioritize health because we realize its value.  And we remember how fortunate we are.  We have good insurance.  We have two good jobs.

My daughter is awesome.  And, not just because she is my daughter.  She is a respectful, kind-hearted young lady.  She has the voice of an angel.  She acts in the plays at school.  She reads for fun.  She swims passionately.  She is an honor student.  She talks about her future, and what she will do with her life.  I have no doubt she has the capability to make a real difference in this world, regardless of her career path.  Today however, I am left to wonder.  Will any job ever be enough?

If the AHCA passes the Senate, we will likely be placed in an unregulated “high-risk pool.”  This is not like my car accident.  This is not a minor inconvenience.  This has the potential to decide the course she will have to take with her adult life, as her health issues will not go away.  We have this genetic mutation with all its risks and ramifications for life.  Lifetime caps, potentially re-instituted will likely be met in her 20s, if not before.

There is no way at all to prove where the mutation came from.  I’d ask you to indulge in a theory with me a moment.  My father, a Vietnam Veteran was heavily exposed to Agent Orange as a Marine in 1967-1968.  My mutation was traced to my father.  He never manifested with Cowden’s Syndrome, but somehow passed that mutation on to me.  Wouldn’t it be ironic, if that toxic exposure in the jungles of Vietnam, in an attempt to fight for his country, ultimately led to this condition in his daughter and granddaughter?  Dad died in 2013, pancreatic cancer that may or may not have been Agent Orange related.  I’m glad he is not here to see the reality that our government may be on the cusp of turning it’s back on his family.

I was raised a proud American.  In addition to my Dad, I have three Grandfathers who were World War II Veterans.  I value the principles this country was founded on.  I am grateful for the freedoms I have in this country.

I have not been raised to use the phrase, “that’s not fair,” but I will ask you to consider a few things.

Last night as I watched the news my head spun as I heard elected officials allege that people with pre-existing conditions have not led good lives.  I am not here to compare, but I will tell you our “pre-existing” condition has NOTHING to do with lifestyle choices.  And if you do not like the site this link came from – scroll to the video.  Hear it from his mouth.

http://www.politicususa.com/2017/05/01/gop-congressman-people-pre-existing-conditions-bad-people-pay.html

I can name dozens of people off the top of my head, as close as within my own family, that would be grossly negatively affected by the establishment of “high risk” pools.

Should a cancer survivor, an MS patient, a diabetic, a person with a brain tumor, a rare heart condition,  a genetic mutation, or countless other conditions be forced to make decision on the path their life should take because they are too expensive?  Are they less valuable?  Do they matter less?

Should we be asked to decide whether or not to keep critical screening appointments, or have access to necessary medication blocked by cost?

We have two good jobs, and this whole thing terrifies me.  But, I will not be controlled by that terror.

This post will reach my Senators today.  Social media can be used for good.   I have a voice.  I will not be quiet about this.

Tell your story.  And if you can’t find your own words, share mine.  Let our Senators know that we are real.  We are not numbers.  We are not a cost-cutting measure.  We have faces, and names.  We matter.  We all matter.

We are determined to remain

#beatingcowdens

We will not be silent!