The Days are Long, but the Years are Short…

Published on June 20, 2016June 20, 2016 by beatingcowdensLeave a comment

A wise person once told me this. I think Meghan was young, and in that two-year span where most of her time was spent screaming. I admit to wanting those days to end when I was in the middle of them. And, while I miss some of the cuddling, truth be told, I’m not sorry I wished THOSE days away.

It’s the rest of them.

From the time she stopped screaming, she’s been pretty cool to be around. And now I look at her eye to eye. While she’ll always be my baby, the years seem to be flying by.

This week I had to explain to her middle school that she would NOT be taking 9th grade math in 8th grade. For some people this makes a lot of sense. For us, not so much. I’m all about the foundation of math, and building without the 8th floor seems silly to me. Plus, really, there is nothing wrong with taking 8th grade math in 8th grade. What’s all the rush?

When Meghan was born she had seven great-grandparents. Two of them she never met in Puerto Rico, but still seven great-grandparents. Insane.

She also had 5 grandparents. That’s a lot of love.

But, I also remember clearly a colleague at work commenting, “That’s a lot of loss she’ll have to endure.”

Three of the most important men in my life.

I was indignant. Annoyed when she said it, because even though my conscious mind knew it to be true, I was not one to sit around and think about it.

We had Cowden’s Syndrome to digest. We had major league health and emotional issues to manage, and I couldn’t allow fear to envelop us.

I surrounded her with the grandparents and great-grandparents as often as I could. And every year that ticked by was a blessing, because she built her own memories and relationships with each one.

The fathers and grandfathers... — The fathers and grandfathers…

Then, in June 4 years ago, in 2012, we lost GGPa, Grandpa Al – Ken’s Dad. He was so much a part of our lives and our family. Ken embraced us as his own when he married Mom, and his family was no different. And Meghan and GGPa… well, she was his “Sapphire,” and they could certainly light up each other’s eyes.

In the fall of 2013, Grandpa Tom got sick. He was never ever sick. But, this time it looked very wrong. And it was. In about 3 months time, he was gone. Snatched away at 65. He had made such an effort to be around Meghan. He was so deliberately making up for lost time and I loved him for it. They had their own set of memories…

A few months later, in October of 2014 Great Grandma Gen headed up to meet the angels she missed for so many years…

And then in March of this year our beloved “Pop” was gone. Pop was larger than life. And even at 96, seemed almost invincible. Until he wasn’t. The ache is deep, and raw.

Five years ago I bought so many Father’s Day cards, people would laugh at me. Five years ago I remember telling Meghan how thankful I was to need to buy that many cards. Five years ago, I couldn’t have predicted…

So much has gone on in our lives on a medical front. If I count loosely I would say it’s been about 10 surgeries between us since that Cowden’s diagnosis in 2011. So often we feel like we are bouncing from one hospital or appointment to another. So often we are scheduling appointments instead of relaxation, surgeries instead of vacations.

But, we make a point to stop. To try. To focus. Yesterday was a tough day. The pain was a bit overwhelming at times. But, the gratitude runs deep, for the family we have. For Felix, the best husband and father we could have ever asked for.

Felix took some of Pop's tools from his car, and brought them back to their glory. Those two had their own special bond. — Felix took some of Pop’s tools from his car, and brought them back to their glory. Those two had their own special bond.

Tonight there was wonder in Meghan’s eyes. She saw the first fireflies of summer after swim practice. They went out to get a closer look.

And I peeked out onto the back deck to catch a glimpse of my 5’8″ daughter on her father’s shoulders – to get a better picture of the sunset.

FullSizeRender (7) — A better view on Daddy’s shoulders – no matter how tall! 🙂

I smiled, in spite of myself. Tonight it’s not about the weeks ahead. Tonight it’s not about the next surgeries and appointments. Tonight, it’s about tonight. It’s about going to bed a little later so as not to miss the little things.

Tonight is about making memories. The little ones. The ones that matter. The ones you carry in your heart forever.

The Days are Long, but the Years are Short…

And we remain forever

#beatingcowdens

Punched in the Stomach…

Published on June 14, 2016 by beatingcowdensLeave a comment

…over and over and over again.

punched

Sometimes that’s the best way I can think to describe it. There are days, so many days, when it’s like a sucker punch that takes your breath away. It’s not going to knock you to the floor. You’re stronger than that. But, man, it knocks the wind out of you.

First, it’s the drive. The traffic. The hours spent headed to the appointment.

Then it’s the “hurry up and wait,” as you strive to be there for your 2PM appointment that COULD NOT be changed to later. Only to wait until after 3 in the waiting room.

hurry-up-and-wait

After that it’s the news. No matter what the appointment is, a Cowden’s Syndrome appointment rarely ends with overwhelming optimism. Well, because they are all so unsure. So they are afraid. And I get it. But, then they tell you the parts they DO know, and you sometimes just want to sit in the corner and bang your head.

THEN after all that GOOD fun, is the drive home.

Usually all in all about 5 hours roundtrip. Whether it’s Manhattan or Long Island it doesn’t really matter. It’s 5 hours at a clip that you’ll never see again. Plus hours and hours analyzing…

About the only GOOD thing that comes from all these is the time spent chatting in the car. Because my kid is pretty cool, and I enjoy her company. I just wish we had more time to be together, at the beach, or a concert, or somewhere fun…

mother-daughter-2

Today it was the orthopedist. He operated on Meghan’s knee in May of 2015. It was the 6th surgery on that knee, all ramifications of a pesky AVM (arteriovenous malformation) wedged somewhere under the meniscus. After the surgery there was PT, then a 6 month follow-up.

In November he released her from PT, and asked for another 6 months. In April he was so bothered by what he saw he brought us back in 2 months. He was troubled by her muscle spasms, and her generally being unwell. The conversation that day led us back to the hormone she was on after the December d&c, the one with the precancerous cellular changes. The medicine that was supposed to help keep the uterus in check. The medicine that seemed to come up an awful lot in April as the source of many problems. We labored over the decision and consulted almost every doctor, but ultimately decided to ditch the medicine and hope for the best.

Today the muscle spasms were gone. Evidence that they were caused by the hormone.

But, there was another pile of information to digest.

Sometimes it’s so hard, because you ask questions, and you just don’t always get the answers you want.

What about that right leg, will it ever match the left in strength? Do you think the foot will catch up?

No, it’s not likely.

Impact activities, even walking over a half mile, cause knee pain. Will this ever resolve? Can she do anything to help it resolve?

No.

So, what do we do when we have to walk far distances?

A wheelchair.

And the conversation continued like that. He is actually quite well spoken, but today his words hurt.

He is a good doctor, a good surgeon too. But, he is honest. Necessary, And painful.

We got some suggestions for strengthening. And a script for a refresher with our favorite PT. Progress will happen. It will just be slower. It will take longer, and harder work than any of her peers.

We don’t use the word fair anymore. It’s all relative. Nothing is really “fair.” But, some days it’s harder to find the bright side than others.

Some days, even when the doctor tells you it’s not right that someone your age should have so many limitations, it doesn’t make it any easier to hear.

Because the reality is what it is. There is both gratitude and pain in the mobility she has. Her drive, her focus, extends beyond limitations. She wants to be free.

Yet, somehow even on the toughest days, I have solace that there is a plan. And it will continue to unfold for both of us.

Tonight we recover from a few sucker punches with chocolate cookies and coconut milk ice cream. Tonight is not for the bright side.

Tomorrow will be different. Tomorrow is school. Full of people who do not know, or who are virtually unaffected by the realities of Cowden’s Syndrome. And tomorrow is drama. And tomorrow is swimming. Tomorrow will be too busy not to press on.

Tomorrow will be for working on ways to keep moving forward.

Tonight will be for resting.

Tomorrow is for

#Beatingcowdens

N.O.S.E. an Acronym that Makes Sense!

Published on June 9, 2016June 9, 2016 by beatingcowdens2 Comments

So many things in life make no sense at all. I don’t need to fill in those blanks for you. No doubt you have a bunch of your own things in mind.

The illogical is part of our existence here. What we do with it is what defines us.

Meghan’s right foot stopped growing a few years ago. I didn’t notice for a little while. She was already wearing a size 9 in the 5th grade.

She had had 5 surgeries to embolize an AVM (arteriovenous malformation) in her right knee. At some point they theorize that by slowing the blood flow to the AVM, the blood flow to her lower leg and foot also slowed, stunting its growth.

Now, on the surface that may not sound like a big deal, and I guess for a while it wasn’t. Most people have feet that are slightly different sizes, many a half-size off. Most people are still able to fit them into one pair of shoes.

But the left foot kept growing. Right now it’s stalled at a 10. We can’t be sure it it’s done.

The ramifications of this began to have far-reaching effects. The different foot size adjusted her entire stride. The smaller foot is weaker, and naturally over pronates. There began to be back and shoulder pain…

There was one more knee surgery last May – to clean out some residual blood and quarterize a few spots in the knee-joint. That proved to make the knee even a little weaker.

There came a point where each foot needed its own pair of shoes.

Keeping her in a pair too big would compromise the weaker AVM leg. Putting her in a pair that was too small was just impractical. So we began to buy shoes in a 9 AND a 10.

Now we consider ourselves fortunate to be able to buy two pairs of shoes at a clip. We have only one child, and I find good shoes to be a wise financial investment. Buying the two pairs is never what bothered me.

My trouble came with what to do with the other shoe.

I threw some away, but that didn’t feel right.

People, not thinking it through, directed me to odd shoe websites. But, the odds of me finding a perfect match were slim to none. It didn’t make sense for us.

So, the shoes began to stack up in the basement.

Some internet searching brought me to National Odd Shoe Exchange (N.O.S.E,) And a million bells and whistles went off. Here was a real, 501c3 charity that accepts “in kind,” or actual SINGLE SHOE donations. They pair them with actual people. They work with amputees. They work with real people, registered in their database, and they send them shoes! History of NOSE

And, since they are a registered 501c3, our donation, as well as any postage, are fully tax- deductible. An added, unexpected bonus.

So, today I mailed a box to Arizona.

In it were three “pairs” of shoes. 10s for the right, 9s for the left, just the opposite of my girl.

And somebody, somewhere, or maybe even several “somebodies” will benefit from Meghan’s adversity.

It seems almost ironic that as I write tonight we are nursing a left shoulder that “froze” today, more than likely the result of the
“off sides” stride.

It locked up in the pool. During the last practice before the big meet this weekend. She has trained so hard. She fights every obstacle head on.

Feisty. Tenacious. And in pain.

Tomorrow there will be more ice. More stretching. More anti- inflammatories.

There is no pause for this young lady. Life keeps careening from one obstacle to another. Yet, she walks straight and tall and with her head high through it all. Counting her blessings. Growing up too fast.

So many things make no sense at all.

But for us, tonight, the knowledge that in a few days time 3 “pairs” of brand new shoes will be available to someone…

Well for us, that is a bittersweet way to find some sense in this big mess.

#BEATINGCOWDENS

#ONESTEPATATIME

In a Dark Room…

Published on May 30, 2016 by beatingcowdens1 Comment

I’m thankful that some nights she still invites me to chat with her in her dark room

Late

After she should be asleep

I’m thankful that we can relate to each other

Different – incredibly different

Yet so much the same

Yesterday I hurt a lot

An unusually extra tough day for me

But I looked at her and I kept on plugging

She knows no other way and leaves no other option

I hate that she bears this burden

There are days it could destroy me

But it doesn’t

She simply motivates me to keep going

She pushes me to be a better person

A better mother

A better human

Often without saying a word

Sometimes in her dark room we’ll share

What we worry and wonder about

Sometimes we tell things we’d never tell another

Sometimes we laugh

Sometimes we cry

Mostly we learn things

Still after all this time we learn things

Like yesterday when I told her that I am luckier because I have her to keep me going

And she looked at me quizzically and wondered aloud

Why do you think I keep going?

And in that moment there was even more clarity

Daughters and Mothers

Mothers and Daughters

We worry and wonder

We argue and spat

We chat and share

We battle

Not each other

But this disease

Together

Different but the same

Pain, surgery, worry, wonder, loneliness, anticipation, anxiety, and sometimes terror

I hate every moment of this road she has to travel

But I am selfishly grateful for the quiet, determined way

She keeps me balanced and focused on what matters

So we can help each other

And remain

#Beatingcowdens

FOREVER

Aunt Em, Arista, Albany, and (Almost) an Ambulance

Published on May 15, 2016May 17, 2016 by beatingcowdensLeave a comment

THAT would be the alliteration to sum up the week that was, Thursday May 5th – Thursday May 12th.

Sometimes I get annoyed at myself that this blog gets neglected. Then I realize it’s because sometimes I have to LIVE the life, before I can write about it.

It was a rocky month leading into the much anticipated school play. Her health was questionable. She spent most of Spring Break recovering from some random illness. Attendance at swim has been spotty, a true sign she’s not herself, but after attending the Swim Team’s annual banquet the night before, she was ready for “The Wizard of Oz Jr.”

FullSizeRender (4) — Meghan with the drama teacher that helped her find a piece of herself.

Meghan knew she liked the stage. She didn’t know until she met her drama teacher in 6th Grade, that she also enjoyed acting, and singing. Her father and I were stunned when we heard her for the first time. Thank goodness for teachers… she may never have found this outlet. And it has been such a wonderful thing. She has met some really great kids, and has had fun along the way.

She was so excited to play Aunt Em in this year’s play, and even more excited because “Dorothy” was being played by a trusted ally, a rare commodity on Meghan’s life. It made the role easier to get into, and to play with her whole self.

FullSizeRender (5) — Meghan and her friend “Dorothy”

Four shows in two days tired them out, but the standing ovation to almost a packed house at the Intermediate School Friday night showed all their efforts to be worth it.

Meg slept almost all day Saturday. This is how it works. We play trade. For those of you familiar with the “Spoon Theory,” (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) we often borrow off the weekend “Spoons.” We don’t get out much, but it keeps things working. She woke some time around 2:30 PM Saturday when I roused her.

chronic-fatigue-spoon-theory

Sunday was Mother’s Day. We visited some special mothers, caught up on some homework, and finished a project. Monday was school as usual, followed by her second year induction into the National Honor Society, (Arista) followed by preparing for Tuesday’s trip to Albany.

Some time over the spring break I was contacted by the office of Senator Andrew Lanza. Apparently, every year, every Senator gets to select a “Woman of Distinction” to be honored at a special ceremony in the Capitol in Albany. We were amazed, and humbled that he had chosen Meghan. The youngest to ever receive the honor, he was attracted to her spunk, her determination, and her “can do” attitude. He liked that she didn’t wait to grow up to start doing something. He liked that she was 12 and making a difference now.

So on Tuesday morning, Felix, and Meghan and I set out on the 2.5 hour journey to Albany. The trip was smooth, until we got a tiny bit lost in Albany, but we were easily saved and set right by the Senator’s staff. Nancy had us in the right direction in no time.

_DSC6837 — Every “Woman” had a bio on the wall. We also got a beautiful book with all the bios inside!

We got to the Senator’s Office and enjoyed a wonderful lunch. We got to sit on the Senate floor, and watch some of the Senate in session. We walked around the building, and enjoyed the afternoon.

The ceremony began at 5:30 and probably my only regret was that I couldn’t record every moment to replay in my brain forever. It was one of our proudest hours as parents.

_DSC6877

https://www.nysenate.gov/initiatives/women-distinction

(If you click the blue link above, Meghan is on Page 44.)

The reception that followed allowed for some conversation with Senator Lanza. An incredibly intelligent, down-to-earth, “regular,” guy kept Meghan chatting for well over an hour. We took pictures, laughed, and she even secured an internship for the summer after her freshman year in High School.

_DSC6894 — Meghan and Senator Andrew Lanza

The drive home got us in the door around 11. We were asleep by 12 and ready for school and work the next morning. Tired, but determined, she even made swim practice.

Thursday I dropped her at school regular time.

By 8:20 my phone was ringing with the school nurse’s number. She was not well, and they were frightened. They wanted to call an ambulance. Knowing where that would lead I begged her to wait. I went into automatic, and with an incredibly understanding group of colleagues and administrators, I was at her school in under 10 minutes.

When I arrived the color had begun to return to her face. She was weak, but able to focus on me. I told them I could take care of it, and I signed her out while they wheeled her to my car. Once in the house I waited a good 3 hours. No sign of a problem.

Rice noodles and flat ginger ale did her in inside of 20 minutes. I can honestly say in her 12 years I’ve never ever seen her that sick. She was in so much pain, periods of time were missing from her memory. I was terrified. But, foolishly or not, I held out. She was hydrated. I wasn’t taking her to the hospital here. Not again. And I knew we were meeting a new GI in the city Friday. If she could just hold on…

And she did. Because for almost 24 hours I just didn’t feed her. She slept most of it anyway. But, I’ve decided hydration wins, and food can wait. It worked. By Friday night she was almost back to herself.

Yesterday she swam in a CYO meet.

My head spins. And the tales I tell here are simply HER end of the week. Add in the routine, and the mundane, and… it’s been a long week.

I have work to do. Lots of it. It’s in a big pile right here next to me. There were plenty of things that “should” have been done that weren’t. And you know what? We’re OK. The house is in one piece. The Board of Health isn’t coming to inspect my extra dog hairs on the floor. The laundry isn’t folded. But it will get done.

Tonight I put me first for an hour, and putting me first is getting the week out of my system right here. Just me, my thoughts, and a glass of wine.

Cowden’s Syndrome – you’ve got some good fight in you, but we are stronger. We will take you every time.

We are #BEATINGCOWDENS!

_DSC6846

A Letter to Me as a “Mommy-to-Be”

Published on May 8, 2016May 8, 2016 by beatingcowdensLeave a comment

Dear 30 Year Old Me on Mother’s Day,

Listen up. Yes, you – acting as the general contractor; living through and participating in your house overhaul, while carefully moving your pregnant belly out-of-the-way. Do me a favor and sit down a minute. You don’t sit much, but you focus better when you do.

Life is hectic, I know. You’re working full-time, working on the house full-time, and trying to wrap your head around this Mom thing. You have a lot to do. I get it. There are papers to process, contractors to fight with, lessons to plan, furniture to order, walls to paint, and tests to grade. There is this small, ok, large human growing inside you. There is so much to think about, but there isn’t time to stop.

Do me a favor, and make time? I mean it. Force it in. Make time for you and your husband to just be. Make time to laugh. Make time to rest. Make time to get in the car and drive the not so far distance to see the handful of friends that have always had your back. Because, believe it or not, your new life will make this chaos look like a day in the spa.

Those friends, they are high quality. And you will always have each other’s backs. But, they will have husbands, and children and houses, and obligations of their own. Before you know it you’ll be keeping in touch with each other’s lives via Facebook and blog posts. (Yes, you’ll have a blog, but I’ll explain that later.) You’ll regret not seeing them more. Not sneaking in a few more dinners out, or some drinks and dessert. The time for that will come again, but it’ll be much later. And sometimes you’ll get lonely. Really lonely.

While you’re still sitting down, reign in some of those day dreams about the smooth way everything is going to go once the baby joins you. Broaden your definition of healthy into a “spectrum.” Refocus yourself onto the important jobs of motherhood; guardian, advocate, supporter, guide, confidant, conscience, role-model, nurse, doctor, therapist, just to name a few. Don’t bother looking at Pinterest. Your life doesn’t work there. Actually, MOST lives don’t work there.

That baby inside of you isn’t going to stay there forever. One day it’s going to make its way into the world in grand fashion. And she, (yep, you’re wrong, it’s a girl) will change your life in ways you could never imagine. By the way, if you can get through to that doctor before the induction, try to save yourself the bags of Pitocin and the HOURS of labor. She’s got a big head just like you. The C-Section is inevitable.

And, she’ll be the biggest baby in the NICU. Right from the start you’ll hear about her feistiness. The nurses don’t lie. Right from the start you’ll have to change your perceptions of how this mothering thing was going to go. From the very first hours you’ll have to learn to go with the flow because you’re about to set down a path you could not have imagined.

For about 18 months you will sleep rarely. She will cry and scream and yell in ways that your family will forget, but you will remember for life. You will learn how to function on raw nerve. You will use the baby pouch you got skillfully to sneak in an hour or two of sleep without dropping her. Because you know she’s not “spoiled” even though she only rests on top of you. You know it’s more. You know it’s her belly and you will hang on when others want easy answers and excuses. You will fight for her because you are her mom. And THAT is what mothers do.

By the time she’s one there will have already been a week-long hospital stay and a surgery that left the doctors “perplexed.” This is only the beginning. Dig in hard and sharpen your instincts. Trust yourself. Ask tons of questions. Learn early that doctors, and therapists are a dime a dozen. Settle for nothing less than the best.

Because those therapists, those Early Intervention therapists, and the Physical Therapist you’ll pretty much use for life, will have some of the greatest influence on your parenting, and on the health and growth of your girl. They will change your world. Listen carefully and learn.

This girl is going to get stuck like a pin cushion and shuffled from specialist to specialist. She’s going to confuse them, and amaze them. She will start to retreat into herself. All of a sudden she’ll be two, and not making a word. Hang on and don’t let her go. She’s not autistic, and never was, but she is medically complicated and she is not well. You will try as hard as you can. You will read, you will frantically research. You will seek out expensive alternative specialists. You will even record her agony for your husband so you can press on for her care as a united force.

You will fire pediatricians, doctors and specialists alike. You will slowly find your confidence. You will become a master record keeper. You will try things that are “different” just to see what happens. You will step over your toddler for two weeks as she tantrums on the floor when you take away her milk. You’ll worry that she’ll never eat again. You’ll get angry when you realize that the food she’s eating is making her more unwell. You’ll learn about the immune system and the GI tract. And by the time she’s two and a half you’ll get a whole lot of babbling. By the time she’s three and a half the speech therapist will cut her loose. Her belly will be flat. She will be much calmer, and she’ll be in a regular preschool with some “transitional and sensory issues.”

Her baby sitters will be tortured by your need to have every detail written down. Because, like a detective you will spend nights poring over things to make connections. You will have volumes of daily diaries, and binders of lab results. You’ll never leave and office without uttering the words, “Can I have a copy of that?”

She’ll grow physically and intellectually. You’ll cherish every moment extra, because you’ll know from where she came. She’ll have surgery after surgery, and a few more hospital stays. There will be scans and specialists to check that knee pain, the joint pain, and every other bit of chronic pain that will plague her young body. It will hurt you to watch, but you will be strong for her. You will not give up. You will not give in. You will press on.

And then in third grade there will be that genetic diagnosis that will turn life on its ear again. “Cowden’s Syndrome,” a “PTEN Mutation.” And you will start to study genetics.

But while you are studying you’ll learn about the health risks and you’ll focus on solutions. You’ll try desperately to wrap your head around the realities of this tumor provoking condition. You’ll hear the word “cancer” more times in reference to your girl then you’ll care to count. Then, you’ll get that positive test result too. That day when guilt takes over for a while. That day when you realize she doesn’t just have your hair and your smile. She also had this syndrome because YOU have it too. Don’t hang out in the pity party for too long. It’s not good for either of you. Trust in the grand plan.

Oh, and those relatives you love so much, the parents and grandparents, they won’t be around forever. I know that’s hard for you to imagine, because there are so many, and they are ALWAYS there. But, one day it will end. Do me a favor and take a few extra minutes and cherish each of them. Even if you’re really tired. Swing by. Say hi. Pick up the phone. You’ll be glad you did. I promise.

Days will blend into weeks, and weeks into months, and months into years. You’ll blink and wonder, but there will be no time to catch your breath.

Because it won’t be long before you’re in surgery for a double mastectomy. Yep. With lifetime breast cancer risks in the high 80%s, and your own history of 7 biopsies, this PTEN diagnosis took the decision from your hands. Don’t stress over it for too long. You’ve got good instincts. The double mastectomy with immediate reconstruction will be one of your best decisions ever. Get home to the angel that saved your life. The pathology report will confirm cancer was lurking in the breast proclaimed clean by MRI a month prior. You don’t need perfect breasts. You need vigilance. This beast will nip at your heels through a complete hysterectomy weeks later. It will swipe at you. Take care of yourself. Recover quickly and completely. Lose some weight. Fill your body with excellent nutrition. This is going to be a battle and you’ll need all your strength.

One day you’ll count and realize there will have been 16 surgeries for your girl. There will have been 16 times when she was walked into an operating room, and put to sleep. 16 times when you’ve prayed harder than you’ve ever prayed in your life, and 16 times when you know the pure joy of gratitude when you see her awake for the first time when it’s through. And you’ll know in your heart 16 is only the beginning. But don’t get caught up in that. TRY to stop putting it all together. TRY to just breathe, and enjoy the moments as they come.

One day you’ll look at your baby, all strong and determined. She’ll be taller than you and you’ll wonder how it went so fast. She’ll be mature, and so smart. She’ll be talented and compassionate. She’ll still be feisty and competitive too. She’ll be as athletic as her body will allow. She’ll swim and sing and be active in fundraising and outreach work too. She’ll be passionate about raising awareness for Cowden’s Syndrome and other rare diseases. She’ll encourage you to tell the story of the struggles you two face. Even though she’ll have a deep understanding that everyone has something, the rarity of this syndrome will cause her to implore you to get a real-time record out in the world. You’ll blog diligently, as often as you can, making sure to have her edit most of your work.

She’ll struggle sometimes, and so will you. Sometimes you’ll even argue. But, it’ll be the most amazing relationship you can imagine. You two will spend more time together than most other mother-daughter duos. Most of your time won’t be on “fun” adventures, but you’ll have hours and hours to talk and get to know each other. You’ll realize she’s spectacular.

If I had to pick the most important advice, it would be to tell her she is enough. Be sure she lives and breathes the reality she is loved. Deeply, and sincerely. Make sure she knows deep in her heart that she is enough, and all she ever has to be is who she is. Middle school is tough work, and she’ll need to believe this in her heart from the very beginning in order to remain true to herself during those years.

It’ll be a busy 13 years. But, every single moment will be so worth it. Trust yourself. Love each other.

Mother’s Day is really every day that you are hugged, loved, and respected. If you put the time in, it will pay dividends later.

I’m not sure what the rest of the journey has in store for us, but I’m sure we’ll be just fine. We’ve got a pretty awesome kid, and we are #beatingcowdens together.

With love,

Your 42 Year Old Self

“…plans to give you HOPE and a future.”

Published on April 24, 2016 by beatingcowdensLeave a comment

When you’re in the middle of it, it’s often hard to see it. You’re in the middle of it, trying to be careful, protective and nurturing. You’re in the middle of it, often wide awake hours longer than your body wants to comprehend. Sometimes you’re terrified. Sometimes you’re confident. Often you’re in prayer. This thing. It’s big. Too big. Like a giant web with unmanageable offshoots.

Somewhere in between trying to get back to school after a night in the ICU last Sunday, and this Saturday morning when she woke, not ready to swim, but with a raging 102.5 fever, I lived a few years.

The last few nights I’ve lived a few more.

Fortunately, I take pretty good care of my body, and when she’s well I make covering between 7 and 9 miles a day a priority. I make eating well a priority always. I invest in nutritional cleansing by choice. It’s a lifestyle. I focus on taking the stairs when I can. Laughing with the elementary school children as I hit the 4 flights in our building over and over is good for me, and them. Some people train for marathons. I train for life. It’s a bit of a marathon itself.

It’s quiet here. Nothing stops a conversation faster than telling in honest frank terms the newest challenges Cowden’s has thrust in our faces. Last week there was the trouble breathing and the debacle of no answers at the ICU.

Tuesday the orthopedist recognized uncharacteristic tightness in al her muscles. Her hips and legs were in full spasms. He was confused. Updating him on what was new since our last visit included the D&C amd precancerous cells in the uterus. It included letting him know she is now on 10mg a day of progesterone. To say he was unsettled be an understatement. He let us in on his fears that the hormones were causing muscular issues, and that he feared her vascular malformation could indicate a tendency towards blood clots which this hormone level left the door wide open for.

Sigh. Growl. He left no bones about where he stood. He withstood our questioning about risks and benefits. He disagreed with the hormones. End of story. I asked if we were to return in 6 months. I was told 2 months. He’s concerned.

And as the week went on she continued to just feel worse. For the second week in a row, only one swim practice. An indicator of the severity of things. By Thursday I reached out to the Adolescent Gyn. She called while we were in the pediatricians office stating how poorly Meg felt. All the suspicious virus tests came through negative. CBC was normal. Our Pediatrician spoke to the Gyn. With reservation on her part, and too much “soft evidence” cited by him. the decision was made to pull the hormone.

This is NOT a decision to be taken lightly, for so many reasons. The least of which, yet still significant, is the generalized body discomfort that came with the months prior to the D&C, and prior to the hormones. It was torture for her. Then, there was the clear declaration, (because everyone likes to speak to the very smart 12-year-old,) that this hormone treatment, this move to arrest cellular growth in the uterus was the BEST way to help ward of cancerous tissue trying to form. In other words this hormone causing chaos in her body was her best shot at avoiding uterine cancer.

So to be in my head was not a good place. To be in the head of my girl… No words.

She woke up Saturday morning very unwell. I don’t recall the last fever. This one was 102.3 at 9AM. Back to the pediatrician we went. Tamiflu and 2 antibiotics. Hit whatever it is hard, real hard, and keep her out of the hospital. That was the plan.

So far it seems we’re on the right track. The fever is waning. The breathing is sometimes tricky. The phlegm is thick. She’s tough. She’d hydrated. She’s resting. She’s doing her part.

There are decisions that have to be made while #beatingcowdens that no one should have to make. There are guesses and speculations we have to play into, with no guide and no proven statistics. We have to focus on today. We have to make decisions based on today, and quality of life issues right now. But even these are insanely complex.

We have a strong girl. We are thankful. We have a God who has a plan. We are thankful for that as well.

There are times, as humans, we want to know more. We want a guarantee. We want insight into the plan. It is a sign of our weakness. We are working on it. Our God will continue to guide us, strengthen us, and move us forward. Be need to breathe in peace and faith.

Some days this is not an easy task.

To our friends, please know we don’t hide. We don’t avoid RSVPs to be difficult. We don’t back out at the last moment because we want to. We miss you. We are anxious for easy, comfortable gatherings. Life just seems to toss things in the way – often enough it gets difficult to dodge.

It’s ok if you don’t have words when we throw heavy stuff on you. It’s ok. Sometimes just to listen is all we could ever ask for. Please listen.

We have not lost touch with your lives. We understand we are not alone in challenges. Do not feel you have to protect us by not sharing. You trusting us, makes us feel valuable. It makes us feel we matter to you.

See just because #beatingcowdens has overtaken our lives doesn’t mean we’ve lost touch with reality. We want to see your baby photos, and hear about first steps, and awards, and sporting events. Call. text, Email, write. Know we haven’t left you for a better deal. We, like you, are just keeping our heads above water.

We remain always, #beatingcowdens

#BeatingCowdens #NoMatterWhat

Published on April 18, 2016April 18, 2016 by beatingcowdensLeave a comment

The week was tough. The pain was real. The reflux was persistent. The fatigue, bone crushing. There were three missed practices and a missed school day, simply because she couldn’t. That NEVER happens.

By Thursday, when she had clocked too many hours of sleep for me to count, I started trying to pull some things together. My “Mommy Senses” were tingling. Things were going downhill fast.

I checked through the files. When was that last brain MRI? She should probably have another because the headaches won’t quit. And, if I want to blame the hormones, which my instincts do, we have to rule out any other possibility. But, we fired the neurologist. UGH. How I dread training new doctors almost as much as I despise working with rotten ones. On the hunt…

And the GI. She is a wonderful woman, but she is on a personal leave. We can’t keep at this level of reflux meds. It will start to hurt her bones. But, I can’t imagine letting her try a day without some attempt to shield her stomach from all this crap. I hated all the GIs. As Pop would have said, “I’m difficult to work with.” And, THAT was on a GOOD day, When someone isn’t doing right by my girl, I’m IMPOSSIBLE. Hunting again…

New doctors. Tough to find. Take up hunks of time while we get used to each other… and in the mean time, we wait.

But waiting seems like such a bad idea.

Saturday she dragged herself out of bed for the CYO meet at CSI. She swam three events, beautifully. But, before the 50 fly, her favorite, she was struggling. She motioned to her head. I made a mental note. She swam like an all-star, turning in her best time again. And then it all went quickly.

She was on the deck obviously struggling to breathe. I grabbed her stuff, and had Felix get the car. We switched seats at the house and I drove her to Urgi Care. By now she was feeling better, but still weak, and tired, and full of reflux. At least she could breathe.

Urgi Care triaged and told me to get her to the Emergency Room. 90 minutes past the swim meet her heart rate was still at 120+.

So in went the IV. Out came just about enough blood, but not exactly enough to cover the blood tests the pediatrician wanted. Then the order for the abdominal CT, and the contrast dye to be swallowed. Two hour wait in a tiny crazy room. Heart monitor, IV fluids. No dehydration. No obvious signs of infection. And a negative CT scan.

There was a ticket to the Peds. ICU for monitoring overnight.

Some dinner from Daddy at 10 pm. ICU monitors everywhere. Medical history to the resident. I come with three typed pages of summary in tow. Medication and history in the computer. Heart rate coming down. No real ideas.

The night passed and I spent more time than I should have ALONE in the PICU. No nurse. Nobody. Made me wonder why we were there.

I watched the heart monitor like it was my JOB. I took notes. I watched the 120+ heart rate hit the mid 40s. I watched the blood pressure dip to 92/37… I walked and watched and walked some more.

In the morning when they showed up again, they told me a heart rate in the 40s was ok for an athlete. Not to worry. Then I asked how 120 could be “mildly tachycardic” if 40 was “normal.” Can’t have it both ways.

The evening resident blew the meds. Even with the cheat sheet. The overnight nurse dosed her with illogical concoction of thyroid meds, despite my cheat sheet. The day resident paid more attention. Definitely more than the dietician who served her a tray with milk AND soy.

There was a negative chest x-ray as they grasped at straws.

The thyroid numbers were all in range.

What would you do? I challenged the resident. What organ do you pick to save? What medication do you give up? I didn’t expect any answers, but I wanted to get in her head. Just a little.

Time to discharge.

With a list of new doctors to find on my own. And absolutely NO answers. So the next time she goes to swim, or play, or do anything, I have no way of guessing if this will be our new normal. Can’t keep a 12-year-old in a bubble.

Onward. Focused.

#Beatingcowdens #nomatterwhat

DO SOMETHING!

Published on April 13, 2016April 13, 2016 by beatingcowdens1 Comment

The story of how a New York City girl got the ear of a West Virginia Congressman is a long windy one that involves the depth of love and dedication the United States Marines hold for their own. That loyalty and brotherhood extends through generations in ways that would be difficult to explain in words.

That, will be the story for another day.

For today, what you need to know is one of those Marines, who I hold very dear, heard me when I spoke. He listened when I told him how my father apologized upon learning Meghan and I had been diagnosed with the PTEN mutation that causes Cowden’s Syndrome.

Once Dad understood the PTEN mutation, he became very sure that he “brought this back from Vietnam.” Dad was certain that his exposure to Agent Orange in the jungles of Vietnam had changed his body. He was also sure that the toxin was responsible for what my genetecist deemed a germline (inherited) mutation in Meghan and I.

We know for sure that Meghan got her mutation from me. What we don’t know with certainty is where mine came from. My mother and younger (half) sister on my mother’s side tested negative for PTEN. My father was never tested. Before I could ask, he passed away from Pancreatic Cancer in December 2013. However, we do know my mutation was not “de novo,” or spontaneous. We know it was germline, “most likely passed through the sperm of your father,” my genetecist explained.

So, all we had to go on were Dad’s instincts, which I knew were in no way going to ever prove causative to the US Government.

But I reached out, and I acquired anecdotal evidence from my online support groups where 4 people other than myself indicated a first degree relative with a similar toxic exposure. In a disorder as rare as Cowden’s Syndrome (1 in 200,000) with group sizes in the low 100s in most cases, these were numbers worth noticing.

Sometimes a theory is all you need. And when you eliminate the need to “prove” and you focus on the need to “educate” and “raise awareness,” sometimes you can make progress.

Today, the story is about how Congressman David McKinley (West Virginia) and his staff listened when we spoke about Cowden’s Syndrome. And they did something.

I was put into contact with Lou Hrkman, the Executive Assistant to Congressman David B. McKinley, P.E. (WV-01). (412 Cannon Building Washington, DC 20515 (202) 225-4172) through that Marine I mentioned earlier. Alan doesn’t give up.

I shared an explanation with Mr. Hrkman, of Cowden’s Syndrome, and more specifically PTEN Mutations. I told him about the impact on our lives. I told him about my father’s instincts. I talked to him about how, with a syndrome like this, KNOWING SAVES LIVES. We spoke about veterans and toxic exposure. We spoke about the thought that exposure could alter genetics. We talked about RARE DISEASES, and more specifically, RARE GENETIC DISEASES. We spoke about how if the doctors at the VA were trained to look for these disorders, or to be more aware, or to educate veterans, or to look for these disorders in descendents of veterans, that it is likely LIVES WILL BE SAVED.

This week I was contacted by Mr. Hrkman, on behalf of Congressman McKinley, to draw my attention to the last paragraph on page 47 of the…

It says…

And there it was. In print. For the VA Hospital System to be held accountable for education.

It is not passed yet. The specifics of the bill need to be debated in Congress, but he is confident.

We who are so anxious to be heard, to be noticed, to be recognized, this is a huge first step. And while I realize many of you are not relatives of Veterans, I feel it is SO important that we take this opportunity to raise awareness NOW!

I asked Mr. Hrkman what people can do.

Here was his reply…

It sounds quaint, but writing or meeting with your congressman is the best thing you can do. Members take notice when their constituents are interested, especially on a personal basis versus a mass mailing or robo call thing. If you write your member, specifically reference the document I sent you (Military Construction, Veteran’s Affairs, and Related Agencies Appropriations Bill, 2017) and the page number. (Page 47) I would also contact Vietnam Veterans and other Vet groups, but Vietnam Vets are especially affected.

PLEASE, right now, my American Friends, contact your representative in Congress. Let’s make them HEAR US. ALL OF US. This could be the start…

PLEASE, share this post far and wide. Tag anyone who you think might help.

It’s time for us to DO SOMETHING…

“Do Something” by Matthew West

I woke up this morning
Saw a world full of trouble now
Thought, how’d we ever get so far down
How’s it ever gonna turn around
So I turned my eyes to Heaven
I thought, “God, why don’t You do something?”
Well, I just couldn’t bear the thought of
People living in poverty
Children sold into slavery
The thought disgusted me
So, I shook my fist at Heaven
Said, “God, why don’t You do something?”
He said, “I did, I created you”If not us, then who
If not me and you
Right now, it’s time for us to do something
If not now, then when
Will we see an end
To all this pain
It’s not enough to do nothing
It’s time for us to do something

I’m so tired of talking
About how we are God’s hands and feet
But it’s easier to say than to be
Live like angels of apathy who tell ourselves
It’s alright, “somebody else will do something”
Well, I don’t know about you
But I’m sick and tired of life with no desire
I don’t want a flame, I want a fire
I wanna be the one who stands up and says,
“I’m gonna do something”

If not us, then who
If not me and you
Right now, it’s time for us to do something
If not now, then when
Will we see an end
To all this pain
It’s not enough to do nothing
It’s time for us to do something

We are the salt of the earth
We are a city on a hill (shine shine, shine shine)
But we’re never gonna change the world
By standing still
No we won’t stand still
No we won’t stand still
No we won’t stand still

This is Our Reality

Published on April 2, 2016April 2, 2016 by beatingcowdens2 Comments

Alone, in a crowded room.

As I look around frantically trying to figure out exactly where, or how I fit, with anyone, my mind wanders. I can’t seem to make conversation, or to pass the time socially as easily as others. I watch. I retreat as soon as I can. I can’t quiet my head. And, knowing the whole line of thinking that occupies my mind some days makes everyone uncomfortable, I step back into myself to cycle through reality.

“Those hormones? Are they causing her headaches? Or is it something more sinister? How would I even know? Do we need to use another MRI? What if it is the hormones? What choice do we have? The doctor said she has to stay on them to stop the development of those “irregular cells” in the uterus they found in December. They’ve already begun to schedule another D & C for July. “You have to make sure…” The uterus is a prime site for malignancy in Cowden’s Syndrome. I got to keep mine until Meghan was 8. Will she get to keep hers? Will she have the chance to make the choice whether she wants to bear her own children? And, even if we save the uterus and she wants to, will it be viable after 15, 18, 20 years of hormone treatment? And at what cost to the rest of her body? What about the breast cancer threat that looms large to a young woman whose Cowden’s Syndrome alone puts her at an 85% lifetime risk. That coupled with a mother and grandmother who have had breast cancer… sigh…why is it even a topic of conversation when she’s 12? It seems so unjust. This issue shouldn’t have to be addressed now, well not ever really, but especially not now. And when she has the headaches I have to give her something. What about the headache medicine? What about that esophagus we are trying to heal?

Is it those medicines that caused the horrendous reflux after Easter, or was it her MINOR indulgence into a few SAFE sweets? Why should a slight indulgence cause such discomfort and vomiting? Why does she have to be so careful all the time about everything? No wonder she is so serious. And what if it is the headache medicine? What am I supposed to do to help her? Tell her she has to deal with it? I can’t imagine “toughing out” a blinding headache.

The knee. Oh the knee. She tries not to complain about it, but I see when she struggles. The AVM is finally stable, but the leg takes a lot of work to develop. She works hard on it too. But, the stamina isn’t there. Hours in a pool yes, on land, no way. Standing too long, walking the mall, or for a short walk, things we take for granted cause such pain. And pain causes fatigue. And on the occasions she relents and allows the wheelchair into use, she struggles. Not for the need to use it temporarily, but for fear of insulting those who have to use it all the time. She is proud. She is frequently humbled. She is conflicted.

And who wouldn’t be? 16 surgeries before the 13th birthday. The need to be tough all the time, while you feel weak. The desire to be stronger. Having to fight, hard, for physical accomplishments. Having to accept the ones that will never be. Never giving up. Pushing to be better. To make the world better.

She’s not perfect. Never has been. And oh, there are DAYS… But she is good, in her heart. She means well. She has no spite or malice, and I can pray it remains that way. I can pray that the children who don’t get it, one day come to understand her, just a little better. That one day they can accept her, for the good in her.

I scheduled 3 doctors appointments for the next three weeks. Dermatology, orthopedics, and endocrinology. The first is a screening. Cowden’s Syndrome, melanoma risks. Her father’s increased risk of melanoma on another unrelated genetic disorder. Her grandmother’s melanoma this summer. Every 6 months they told me. Bring her every six months. The others will work on long-term plans. Spring break. Every holiday, every vacation. Every day off. Doctors. Not the mall, or a friend’s house. Doctors. For what? And I’ve toned down the list quite a bit.

There are two bills of my desk. One for her and one for me. Both a battle. Always a battle. If it’s not the reality, or the appointments, it’s the bills. And we are so fortunate to have insurance. But, the hours. Oh my goodness, the hours…”

I try to shake it off. To stay focused on the good. On the positive. On the blessings, and they do abound. But, so often it’s just me, and my head. Working to get out of my own way.

I miss my Pop. I miss my Grandma even though she’s still here. I miss their goodness. I miss my Dad. I miss his listening ears.

I quiet the voices a little and try to follow the conversation around me. I smile politely and nod. I stay quiet. “It’s good.” “We’re good.” That’s about all they can handle anyway. Even the ones who genuinely do care. Why drag someone to a place where there is absolutely nothing they can do or say?

This is our reality. This is Cowden’s Syndrome. This is every day. As long as we have breath, and strength, and stamina to shake off the pain, place the smile firmly where it goes and press on, we will.

Because the real reality is that every person in the room may have a similar string of thoughts in their head. The reality remains that EVERYONE HAS SOMETHING…