Miles to Go…

Published on September 27, 2016September 27, 2016 by beatingcowdensLeave a comment

September is a marathon of sorts. Although all the training in the world can never quite prepare you for the twists and turns needed to navigate it through to completion.

September is establishing new routines, in my own classroom, and in our lives. September is learning new students, and new teachers.

Each year, it is about pushing our bodies farther than we have ever been able to. It is not just about surgical recoveries, or broken toes, it is about swim. So much swim. It’s about swim before sun-up, and afternoons too. It is about drama and singing and doctors in between. It’s about finding the inner strength to press on.

It’s about balancing it all. Work, school, after school, meetings, and the like. It’s about stopping to find the beauty, and the sunrise, and the simple pleasures along the way.

This life, this chronically ill life is lonely. I’m not going to lie, or even try to sugar coat it. It is lonely. But, we three in this house embrace and press on. Because, really, there is no alternative.

There is no fault, no anger, no resentment. Reality is that every moment is spent using all the “spoons” we have to get through. At this moment there are no extras. Family and friends who comprehend will still be there with open arms when there is a “spoon” or two to spare. The rest will have found their own way, and that is a loss we will have to take in stride.

Everyone has something. All lives are busy. All lives have joy, and angst. All we can do is take what is in front of us and do the best we can with what we have where we are.

The worry in my heart runs deep. There is reason for it, yet I battle it all the time. It can not, nor will it, define me, or our lives. Regardless, it lingers always, lurking in the shadows.

My girl continues to amaze and impress with wisdom beyond her years.

For her birthday Meghan had a very specific request this year. One of her gifts was, “The Unabridged Poetry of Robert Frost.” I was familiar only with one of his most famous poems. Meghan read this book fervently for most of August. I think I understand why now.

Lab work tomorrow to keep those thyroid hormones in check. We need our strength to remain

#beatingcowdens

Pathology…

Published on July 26, 2016 by beatingcowdens2 Comments

About an hour ago I got off the phone with Meghan’s gynecologist. It seems we dodged another bullet.

Mostly.

Once again we got to spend about 45 seconds in a deep breath as we were told there was no evidence of malignancy in the uterine biopsy from last Friday.

BUT…

There is always a “BUT…” I’ve come to expect it now. After she spoke, she paused.

I asked her why she sounded happy and hesitant at the same time.

“Well I just got off the phone with the pathologist…” and her voice trailed off.

So much was what she expected when she spoke to us Friday. But, it was still bothering her that there are polyps. And more than one.

“It just shouldn’t be…”

Sigh.

We’ve heard this so many times before. “It just shouldn’t be…” But, in fact it is.

So the polyps were benign. The tissue sampling was benign. This is a good thing. A very good thing.

But, this whole situation. The whole scenario that causes all sorts of conversations a 12 or 13, or even a 19 or 20 year old for that matter, should NEVER have to have, is just not ok.

There are thoughts, decisions, trade-offs, conversations, risks and benefits that make deciding on a high school seem trivial. Strange that THAT will be the toughest thing most girls her age have to do this year.

And as I look at her, it kills me inside the things she has to go through, and the thoughts she needs to think. All I can do is thank GOD, that He trusted me with this beautiful, dynamic, witty, young lady. And I promise to take good care of her until the rest of the world figures her out.

(and really, for FOREVER. as we remain #BEATINGCOWDENS together!)

The Waiting Place…

Published on July 20, 2016July 20, 2016 by beatingcowdens2 Comments

A quick Google search brings the definition below when the word “patience” is entered.

pa·tience

ˈpāSHəns/

noun

1. the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.

I’ve been thinking a lot about patience these last few weeks. It’s something we work on from a very young age, yet I’m not quite sure it can ever be attained in its purest form. At least not by me. Not if I’m honest.

And I tend to be honest right here. Which some might think is an odd place to make that choice, but that’s for another conversation.

We work on patience when we are young. Waiting for play time. Waiting for school to end. Waiting for a party. Waiting to get there. Waiting for the game to finish. (Waiting at ‘the waiting place’ like Dr. Seuss in “Oh, the Places You’ll Go”)

We learn that patience will help us get things faster. If we are patient our parents are more likely to bend. If we do what we’re told and wait, things are more likely to go our way. That ice cream cone has a better chance of landing in our hand if we’ve exercised patience than if we’ve badgered.

When we get a little older there are less overt rewards for patience, yet it’s still a necessary virtue to master. Those without patience are deemed immature. If we are overly demanding it endears us to no one.

I know this. I know all of this. And generally I am a pretty patient person. But, I must tell you I have thought long and hard about the amount of patience required to navigate Cowden’s Syndrome and its ramifications, and it seems to be an inordinate amount.

I get it. I’ll say it a thousand times to anyone who will listen. Of all the “rare disease” cards to draw, this is by far among the better ones. I know of the suffering of so many who are diagnosed with torturous terminal diseases. I know of so many who would trade places with us in an instant.

If the PTEN mutation causing Cowden Syndrome is found early, a lifetime of vigilance can often ensure longevity.

It’s just that with that vigilance, you need to much darn patience. So with my gratitude, I sometimes battle frustration. Which is ok. Because I am human.

In the last 21 days I’ve been to Manhattan 4 times for doctor’s appointments, and another 2 to Long Island. The average roundtrip for these appointments is about 5 hours. 5 hours to travel in insane traffic regardless of the hour. To Manhattan the distance is only 13 miles and I can not tell you how many times 2 hours hasn’t been enough time to be on time.

But, I should never worry, because they are rarely, if ever on time. And while I understand the myriad of reasons doctors run late, still the patience sometimes runs thin. Especially when we are anticipating another traffic filled journey home.

The patience wanes when I call offices and 2 days lapse without returned calls. I struggle when I have to spend hours explaining what test I need insurance authorization for, only to have the person speaking to me become hysterical with laughter, presumably because they are being told a joke. I’m not against laughter. I actually like it. But, when I have to now cancel the test ordered by the doctor I never wanted to see in the first place, sometimes I just can’t find it funny.

When I call for an appointment and I’m given a 3 month wait time. And an appointment smack in the middle of the work day. I lose patience. I don’t expect special treatment. And its a good thing I don’t. But its sometimes hard to stay patient when you’re juggling over a dozen specialists (each) and a full-time job, and academic honors.

So in the summer I try to be even more patient. But by default I have to get a lot of things done in the summer. We are actively trying to shove in some fun, in between a boatload of appointments. I try to squeeze in time in pockets of my day to regroup and relax. I try not to cringe when my Facebook news feed is full of play dates and day trips. Why shouldn’t it be? I don’t WANT anyone else to have to sort through this mess.

Friday is Meghan’s second uterine biopsy. PTEN mutations tend to cause most of their cancers, although not exclusively, in the thyroid, breast and uterus. The fact that she hasn’t hit her 13th birthday yet, and this will be her 17th round of operating room, general anesthesia procedures is taxing. But, we will be patient. We will be patient tomorrow when we wait for the time of Friday’s procedure. And we will be patient on Friday as there are often delays. We know.

We will be patient over the weekend as she adjusts to the discomfort and pain from the procedure.

We will be patient while we wait. And wait. For the critical pathology report.

We will be patient while she heals enough to return to the pool. Her happy place.

Patiently we will continue to navigate the road of vigilance, peppered with mines that need to be avoided at all costs.

We will pretend, each time we meet a new doctor, that they are the most important. We will not even try to explain the full complexity of the scheduling of life. They have their own problems. They don’t need to hear about ours.

When we each face our own lives we know the challenges presented to us. I don’t want any of yours. At least I understand the task at hand here.

I have gratitude that I am given the opportunity to allow my vigilance to matter. I am patient. Mostly.

pa·tience

ˈpāSHəns/

noun

1. the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.

Usually I take a deep breath. A bunch of times. I’ve learned patience gets you farther.

So if some days are harder than others, I ask you to have patience.

#beatingcowdens can be exhausting.

“We’re All in this Together…”

Published on July 16, 2016July 16, 2016 by beatingcowdensLeave a comment

High School Musical – We’re All In This Together

“…Everyone is special in their own way
We make each other strong
We’re not the same
We’re different in a good way
Together’s where we belong

We’re all in this together
Once we know
That we are
We’re all-stars
And we see that
We’re all in this together
And it shows
When we stand
Hand in hand
Make our dreams come true…”

The news is filled with horror stories. Local and abroad, young and old. Lives lost through senseless acts. Cries for unity, and division sometimes drown each other out. From the grand scale, to stories closer to home, we seem collectively to be lacking the notion that, for lack of a better phrase, “We’re all in this together…”

As Rare Disease patients, one of the statistics that blew Meghan and I away early in the game, was the one that said 1 in 10 Americans suffers from a Rare Disease. If all of these people got together, they would make the world’s THIRD most populated country.

30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population.
If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country.
Source https://globalgenes.org/rare-diseases-facts-statistics/

We have wondered through the years what good could come of uniting forces for the benefit of all Rare Disease Patients. And slowly we are starting to see charities connect for the betterment of the big picture. The PTEN foundation has teamed with a patient with Duchenne Muscular Dystrophy, to raise funds to benefit both causes, and for those that remain undiagnosed.

Please consider supporting this cause. There is important work being done for all.

(FROM THE PTEN FOUNDATION FACEBOOK PAGE) Exciting News!!! We have a team of 12 sponsored cyclists that will support Ride4Gabe getting the word out about ‪#‎Duchenne‬ Muscular Dystrophy,‪#‎PTEN‬, and all Rare Genetic Illnesses with unmet medical needs. This is huge. You can help, please share this and our team go fund me link often. 1/2 of all proceeds will go to our PTEN Foundation.

HTTPS://www.gofundme.com/wesupportride4gabe

THEY GET IT! They understand, “We’re all in this together…”

I was never a huge fan on Disney’s High School Musical. I’m not really sure I ever sat down to watch, and I likely judged without thinking. But I’ll be the first to tell you first impressions can be flawed. And I’ll also tell you that I ‘get it’ on a much more grand scale after last night.

For us it started with a friendship that bloomed between Meghan and one of the most compassionate young ladies I have ever met. They’ve known each other forever, but only in recent times have they come to know each other as “friend.” They spent time on stage together through middle school productions, and it was through this young lady we learned of a Summer Theater opportunity offered.

Meghan's "Sisters" not by birth, but through love, heart and choice. — Meghan’s “Sisters” not by birth, but through love, heart and choice.

We are a self-sustaining program sponsored by the Staten Island Mental Health Society whose mission is to promote positive mental health through the arts. We are currently celebrating our 52nd Season of bringing live theater to children and families.

Looking for a summer change of pace, and not knowing at all what to expect, I dropped Meghan off to the Snug Harbor dance theater where these forty-five or so 9-18 year olds would spend the next 8 days generating a full “junior” production. I walked into the back of the room for the parent meeting at the end of the first day, and I watched the children, and young adults, attentive on the floor. This was July. There were a lot of them. Their respect had already been earned by the staff. This was a “no-nonsense” set up. We received out parent information and as we left to head home, my girl said very little about the day. She told me she liked it though, and this was a big win.

Some of the children in the program were new, like she was. Others had been in the program for years. And somehow it seemed to not matter. Ages, genders, styles, personal interests, there seemed to be very few alienating factors. Everything seemed to be joining them together.

Each day pick up was a little smoother. Names were a little more familiar. Identities seemed a bit more well-established. By the time we came home last Friday, it was hard to imagine they had only spent a bit more than 24 hours together.

10-4 for eight days they sang, they learned, they laughed and they grew. They focused and learned that they needed to keep …

“Just keep ya head in the game
Just keep ya head in the game

And don’t be afraid
To shoot the outside “J”
Just keep ya head in the game…”

They became a team. They became a group of high energy youth, who each possess their own strengths. Instead of trying to outshine each other, they learned they would shine best together.

Last night before we got into the theater I looked around. I saw photos from the dress rehearsal, parents and children I knew from other walks of life, and family and friends there to support my girl. I am an over-thinker. I always will be. It was hard not to think one week from then she’d be, God-willing, on my couch recovering from another biopsy. But, that was not about tonight. Tonight was about #beatingcowdens by being part of a group, by being one of “them,” and by being on that stage in a very present way. So I cleared my head, and I watched.

Sneaking in a Proud Mommy Moment 🙂

I watched a play about finding your own identity, supporting each other, not being linked into your “label,” following your passions, learning trust, and forgiveness and so much more.

I never was a fan of “High School Musical,” until last night. Last night I realized that there was such a timely, deeper meaning.

Truly, “We’re all in this together…” and in the words of Ben Franklin, “We must all hang together, or most assuredly we will all hang separately…” It’s time.

It’s time we stop seeing labels, and who we think people are. It’s time we start learning who they really are. It’s time to start celebrating the good. Because there is much good to be celebrated.

On an island knee-deep in a very real drug crisis, hitting every single walk of life, I am filled with gratitude for SICTA, for giving children something to focus on, and for instilling a positive message of self-worth and deeper meaning. I can not name all the adults who touched my girl’s life this week for fear of leaving someone out, but YOU, YOU are leading by example. I am full of gratitude.

Life #beatingcowdens is riddled with twists and turns. You gave us a brief respite.

And, as the lovely young lady took Meghan from the steps of the theater and invited her to the diner “with the cast,” so many things came together.

“We’re All in This Together,” indeed. THANK YOU #SICTA

“1,2,3…BRAVA!”

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

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

“Hey, I follow you on Facebook…”

Published on April 29, 2016 by beatingcowdens1 Comment

There we were in the back of DSW looking for a pair (or two for accuracy sake) to fit the feet of my girl for “Aunt Em” in her school’s performance of “The Wizard of Oz” next week, and a woman approached us. She was happy, and friendly, and it seemed excited to see us. Meghan and I had never seen her before in our lives. But, she seemed to know an awful lot about us.

“Hey, I follow you on Facebook!. I am amazed by your story. And you guys stay so positive all the time. Such an inspiration!”

I’m not sure either of us knew quite what to do, so we smiled politely and said our thank yous.

Then we looked at each other.

Did someone just recognize us? Like we matter? A complete stranger? Wild.

There are times I write, or we write, and I feel it is simply a therapeutic output into cyberspace. Yet, we receive messages, some from all over the world, confirming our story is getting out there. We know all about digital footprints. But Wednesday, well we finally saw our own – face to face. In the shoe store.

Why do we tell our story? Why do we keep at it through the mundane and the heart-stopping? Meghan says, because the truth needs to be there. When someone looks, they need to find real people like us, getting by, every day.

I guess she’s right. She often is, although I don’t make a practice of TELLING her that…

Spring Break 2016

It sounds almost funny to say it. But, we are ALMOST used to it. See, there ARE no breaks. There just aren’t.

Doctors appointments take time. On average 4 hours roundtrip to Manhattan considering wait time and traffic. I have work. Meghan has school. We miss more than we should of each. Routine appointments are for days off. That’s how it has to be. But, then you add in a flu-like virus from who knows where, and you insert about 3 extra visits to the pediatrician, on top of a cardiologist, just to be safe, well by the time you get to the routine sono of the thyroid bed (where the gland was removed to check for regrowth,) and the dermatologist, and the endocrinologist, and the traffic, and the very fair school project… There is just about enough time to switch a closet or two, wash a few windows, and about HALF the curtains you intended to, while sneaking in one LONG trip to the grocery store.

We spent the early part of the break watching a few movies on Amazon Prime. This is a real treat for Meghan because I am ROTTEN at sitting still.

And somewhere in between “Ferris Beuller” and “Annie” we grabbed a few lessons.

From “It’s a Hard Knock Life…”

“Don’t if feel like the wind is always howling?
Don’t it seem like there’s never any light?
Once a day, don’t you wanna throw the towel in?
It’s easier than puttin’ up a fight..”

Sometimes when I come into the house I love, instead of feeling calm and relaxed, my heart starts to race. I think of the papers, and the phone calls, and the bills, and the scheduling, and the terror of missing something, and the compulsion to keep up with the basics, and I just want to sit on the floor and cry. Sometimes I even do. Sometimes I even get grumpy for a while. Then, usually when no one is watching I’ll grab a dog and rub a belly, or do something silly to try to shake off the enormity of it all.

I remind myself it’s about every little piece. It’s about one day at a time. It’s about counting the days with no headache instead of always the days with knee and hip pain. It’s about looking at the pile, neatening it up. Making a list, and leaving it there to go for a walk. Some days I get it better than others, but I’m a work in progress.

Yesterday, we did well with the pediatrician. He drew some more labs, but feels she’ll be well enough for full activity Monday. The dermatologist, routine Cowden’s Screen, was without incident too.

Today, the new endocrinologist (only our second visit) proved himself to be a wonderful addition to the team I am so desperately trying to form for Meghan. I DREAM of the day I get them all together, assign a captain and let THEM help me. But, for now, he is bright, inquisitive, and willing to toss out the “rules” when he treats Meghan. So the hormone that we had to ditch, the medicine that was out to save the uterus that now has to save itself, well that medicine can mess with T3 Uptake, one of the thyroid hormones. Meghan has a hard time converting T4 (Synthroid) into T3, so we actually supplement with T3. Most doctors have no idea. He said lets raise it and check her in 2 weeks. Works for me. Feeling like a validated human is priceless because this child is so exhausted all the time, it’s just not ok.

He scanned that thyroid sonogram report, reassured us about a renegade “reactive node,” and moved it to the “watch list.”

The next few weeks are set to be a whirlwind. I can only pray her body is up for the task. Lots of good, and happy things on the agenda.

It’s a busy life. I wanted to see some people this week. I wanted to reconnect with at least one friend. I know they are out there. And yet again, the week didn’t allow me any advance planning. Can’t expect people to wait around for me. So my music and my computer keep me company, with the laundry and the dishwasher, while Felix and Meghan celebrate at a Sweet 16. It’s good for them to get out together sometimes too.

#Beatingcowdens

requires focus, stamina, and its own brand of mental toughness.

We’ve got this.

“…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

Onward…

Published on March 20, 2016 by beatingcowdensLeave a comment

“Onward Christian Soldiers, marching as to war, with the cross of Jesus going on before…” That was one of Pop’s favorite hymns growing up in our Lutheran Church. He sang it loud. He lived it softly, but meaningfully…

It’s been a long time since I have written and I am sorry.

Writing is my therapy. It’s free and easy. When there is a few minutes to do it.

And that, well that has been the problem these last few weeks.

I know it’s hard to imagine life getting so crazy that I wouldn’t have an hour or two a week to get my thoughts together, but it’s true.

Time to catch you all up –

On Sunday, February 21, 2016 the Second Annual “Genes for Rare Genes” fundraiser took place at the Hilton Garden Inn on Staten Island. We had www.yeehahbob.com Bob Jackson from Walt Disney World at the piano entertaining the masses. We had generously donated raffles galore. We had 178 friends and family with us, raising money and awareness for Rare Diseases. We had Meghan, hosting, and giving her speech and showing her video. https://beatingcowdens.com/2016/02/21/meghans-rare-disease-day-video-and-speech-2016/ We had Borough President Oddo stop by to continue to support Meghan in her desire to raise awareness and funds. We had Charlie Balloons entertaining the children and the adults too.

Bob Jackson - Our Disney Friend — **Bob Jackson – Our Disney Friend**

It was a perfect day, and a month later I can tell you the total funds raised were $13,045.40 to be exact! A large portion of that money has been sent to the PTEN Foundation and will have a significant impact on helping people like us with PTEN Mutations. The balance of the money is soon to be on it’s way to the Global Genes Project They will always be near and dear to Meghan. We identified first with the denim ribbon, and the logo “Hope, It’s in our Genes.” And that is the site we learned first about Rare Diseases, and that we in fact are among the lucky ones. These are lessons we will never forget.

Finally, I THINK, (and I apologize if we forgot anyone) all the thank you notes have been written or Emailed. When I finally settled down to do it, there were over 80. Meg helped, but I just flat out write faster. Now, we rest on that a bit, while we consider what changes and what remains the same for next year.

But, life did not even pause while we planned this event. My grandfather, my 96 year old grandfather, who was still living on the second floor of the two family home my mother grew up in, caring for my grandma, his bride of 70 years, fell on January 13th. This set of a tirade of events of the next few weeks that brought us all through an emotional roller coaster. My grandparents were the center of my world for much of my life, and even though I am blessed to have had them for 42 years, it is hard to imagine navigating life without them. Pop visited two hospitals, had mutliple strokes, and ultimately ended up in the nursing home for rehabilitation. The rehab was not meant to be, and on March 3rd he passed away peacefully, after some tumultuous days.

Pop - So much to so many — **Pop – So much to so many**

Grandma, now resides in that same nursing home. Alzheimer’s has robbed her of much of her memory, but she is well cared for by kind, patient people. She is safe. She is calmer. This is a good thing. And, in one of many ironies, perhaps her disease has been a blessing. There was no need for her to say goodbye to Pop, as he always seems to be just “across the room” when we visit. They were never meant to be apart any way.

Always together... — **Always together…**

We celebrated Pop’s life at a beautiful service on March 12th. My conscious mind, the rational one, is grateful he is at peace, and thrilled to know he is Home in Heaven. The little girl in me, the one who adores her grandfather is sad. Just very sad, and not looking forward to the series of “firsts” in front of us as reality sets in.

I planted the seedlings for my garden, just as my Pop showed me. I am tending to them on the kitchen table with plenty of sunlight. They have begun to sprout.

And those seedlings, and signs of new life remind me of why Pop loved the garden so. It is refreshing to see growth, new life, and new promise each day.

We celebrated Kathi’s bridal shower, as she and Jon will marry April 15th. All things new.

Time keeps passing.

In the interim there have been regular Mommy things to do, like swim practice, and doctor’s appointments, and household stuff. Thankfully in this house we have a very, very helpful Daddy, and we do a lot of team work. Thanks to him, all those weeks I was out of commission cherishing every moment with Pop, he was here, keeping it all going.

Last week we went dress shopping for some of the events coming quickly.

This week it was shoe shopping. Shopping for shoes is never as much fun, because it is hard to find a shoe that is 12 years old, and supports those feet, knees and legs. The right knee, the site of 6 surgeries targeting that AVM, has residual damage. The muscles are not formed as well, obvious only to Meghan when she puts on a pair of jeans. The foot is over one full size smaller than the other, and it is skinnier too. So, we buy two pairs of shoes to make one “pair.” We are careful. Frugal when we can be as it’s all x2, but focus is always on fit, style and comfort combined. No easy task. But, we did it.

Meghan left the store apologizing for the bill. I told her how grateful I am that we can pay for shoes, and other things. We had a long talk about the phrase, “I cried because I had no shoes, then I met a man who had no feet.” It fits nicely with the perspective talks we have all the time.

Tonight I was thrilled to find a website that will allow me to donate her “other” shoes to amputees. She was excited too. Something that will make us both feel better.

This week I scheduled some more appointments. I was waiting.

Friday we head to the gyn for the 3 month follow up. The hormones are a nightmare, but that’s for another post. The next biopsy is supposed to be in June…

The dermatologist 6 month will be during spring break. So will the orthopedist.

Cowden’s wasn’t gone. Heck, it wasn’t even resting. I was just using a big stick to hold it at bay for a few weeks. I’m sure I left some stuff out. It’ll come up if it was all that important. Just know-

We are still #BEATINGCOWDENS!

Onward…