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

“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

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…

I booked dinners for our Disney trip today. I like to plan ahead. Plus, Disney gives me a little extra strength, so that we can remain always,

#BEATINGCOWDENS!

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…

“Super” Man

Published on March 6, 2016March 6, 2016 by beatingcowdensLeave a comment

**Pop brought a smile, love and humor to our lives.**

Superheroes are invincible. No matter what they always find a way to pull through. They make complicated tasks look easy. They make the world a better place just by being there.

Thursday night my family said goodbye to our Superhero. Pop passed away at the age of 96.

Now, before you get on about telling me how lucky I am. I know. Before you tell me he lived a good life, I know. Before you tell me, “at least he’s at peace.” I know that too. I recognize fully that I am 42 years old and I am saying goodbye to my GRANDFATHER. I get how epic it is that he got to know and love his great-grandchildren. I understand all of it. I am acutely aware of young, tragic stories that pepper this world. And, my heart breaks for each of them. But, please don’t think for a moment it will make enduring this loss even the tiniest bit easier.

For every moment of my 42 years there has been Pop. There has been the ability to call him, to chat with him, to follow him around, to hear his stories, to receive his hugs, his humor, and his love. There was Pop to read to me as a young child. There was Pop to teach me about the basics of a car, and oil changes when I went to college. There was Pop to dance with me at my wedding. There was Pop to take his 80-year-old body to my house every day and place my wood trim, piece by piece. There has always been Pop. And now there isn’t.

There was Pop and Grandma living upstairs during the years when Mom had to work a lot. There was Pop to drive me everywhere. There was Pop to record important events. There was Pop who NEVER said,”No,” and NEVER made you feel like you were bothering him. There was Pop who played in his garden, growing lima beans, string beans, cucumbers and tomatoes. There was Pop who built his own deck, and sided his own house. There was Pop who made everything look easy. There was Pop who made rocking horses for grandchildren and great-grandchildren. There was Pop who picked up Meghan from the school bus until about 4 years ago. I could sit here forever and the list would just extend. There has always been Pop. And now there isn’t.

I’ve been pretty silent on this blog for a few weeks. Not because Cowden’s up and left us alone. But, rather because there were other things that needed attention more. For a little while.

I got the call on January 13th that he was at the hospital. He had fallen. They were testing. He was discharged a few days later, although he was only home a few days. Before the rehab could start, he was taken to a different hospital. Strokes were occurring. There was an attempt at rehab there, and then a move to the telemetry floor, and finally a move to a local nursing home to try some rehab there. The strokes had taken away the thing he prided himself on, his mobility. The right leg wasn’t interested in coming around, despite efforts from several good therapists over many weeks.

Pop was many things to many people, but he was undeniably stubborn. That tenacity undoubtedly is what had carried him through the months preceding the series of strokes. He had Grandma, and he was set on taking care of his bride of 70 years, at all costs. He knew we were losing her to alzheimer’s. He was aware in so many ways. Yet, he was unrelenting in his forceful desire to care for her at home, “as long as God gives me breath.” He took only help from my Mom, and in the very short time preceding his hospitalization there was an aide for a few hours each day. But he, cooked, cleaned up, did laundry, shopped. And they lived on the SECOND floor of their home.

He modeled “in sickness and in health,” and “for better or for worse,” in ways that people do not even comprehend anymore. He took his vows and his promises so seriously. I learned what it meant to be married watching them through the years. They modeled love and respect, and he never ever walked away without kissing her goodbye.

That’s why he pushed so hard. Just as he had for all of us through the years, he was propelled by love of God and love of family. He drove his own car, albeit short distances. He handled the bills, the paperwork, and navigated Email and the internet. In the weeks before he passed we watched our 96-year-old Pop go from behaving like he was 70, to being 96. And it was not easy to watch over 25 years catch up with him in those weeks. It was not easy to watch the frustration, the desire to move, and the pounds slipping away as even eating became a challenge.

Grandma now resides in the nursing home Pop passed away in. And she is incredibly well cared for. I do think he would approve. But, her memories are leaving her. And maybe at this point, maybe that’s just better. Because to process the loss of Pop is incomprehensible to those of us who have a tight grasp on a lifetime of memories. Maybe that’s one of the blessings I can find here. Because I know when it’s time, they will be together. And I know the time they will spend apart will equate to a small fraction of the life they spent together.

When Pop first was hospitalized I was quite upset, and I apologized to a friend who had lost her mother at a young age. She spoke to me so kindly, I will never forget. “It’s hard for you because you’ve never lived life without him.” So gracious when she could have chosen to go in so many other directions.

Those are the words that give me comfort. Those are the words that tell me it’s ok to grieve. It’s ok to feel like I’ve got a 600 pound boulder on my chest, suffocating me. Those are the words that tell me that 42 years is a long time to have someone in your life and then lose them.

Pop was sharp. He was up on all of us, and all of our lives. He knew specifics, and questioned and followed along. Meghan always said she was in awe of how he defied his calendar age. She, like the rest of us, was enamored. And as he was at the second hospital having a scan, and he educated the lab technician on Cowden’s Syndrome, I had to laugh in spite of myself. He was always learning, and he wanted to make sure others were too.

I walked through their house yesterday, as I have done so many times before, but this time I stopped and looked at the Bible, held together by tape from constant use. I looked at the devotional set to January 12th, the day before he fell, and I smiled. He was, above all things, devoted to God.

The first great grandchildren - Luke and Meghan — **The first great-grandchildren – Luke and Meghan**

His memorial service will take place next Saturday, at the church I grew up in, at the church he helped build and maintain for so many years. I have some time to get my thoughts together before I speak that day. Pray that I may find a way to honor my grandfather, where words just don’t seem significant enough.

Right now we look for the promises of Spring, and new life. We look forward to my sister’s wedding. We press on, not because we are not broken, but because there is no choice.

Our hearts are torn, because there is never ever enough time. That’s what I tried to get at on my Facebook page.

“I am convinced there is never enough time with those who love us so deeply, and those we love beyond measure or words. We are so devastated at the loss of Pop, who was the anchor of our family through every storm, the wind to our sails, and the bridge under our feet. He was so much to all of us, and through our different relationships he somehow made us all feel like we were incredibly important. He lived through deeds, not words. His actions spoke volumes of his character, and were so telling of who he was. He lived his life in service to God and his country, while loving his family immensely. Rest easy and celebrate with the angels Pop. We will miss you every day. Until we meet again…”

Meghan’s Rare Disease Day Video and Speech 2016

Published on February 21, 2016 by beatingcowdens3 Comments

This is the text of the speech Meghan delivered at this year’s “Jean’s for Rare Genes 2” Fundraiser. Regardless of the monetary totals, which will come in the next days to weeks, I can assure you it was a success.

I want to start by thanking you for attending this fundraiser here today. This is the second “Jeans for Rare Genes, a tradition I hope continues to grow each year.

I knew nothing at all about Rare Diseases until the fall of 2011. I was in 3^rd grade. I went to a geneticist because I was having all sorts of medical trouble. He diagnosed me with Cowden’s Syndrome. A few weeks later he diagnosed my mom with the same thing.

Cowden’s Syndrome is a mutation (a break or a mistake) on the PTEN gene which is a gene that is supposed to keep the body from making tumors. Basically, when you have Cowden’s Syndrome, which is pretty rare (only 1 in 200,000 people) your body makes tumors. Sometimes they are benign, and sometimes they are cancer. It also causes my body to make vascular malformations, like the one in my right knee, that has caused me 6 surgeries all by itself. That is why with Cowden’s Syndrome we have to be watched all the time. There are so many doctors, so many things that need to be checked, and scanned and looked at, it can be really overwhelming.

You can’t catch Cowden’s Syndrome, it has to be inherited, like I got it from my Mom. You also can’t get rid of it. Once you have it, the only thing you can do is get checked, a lot.

I have had 16 surgeries so far, and I only turned 12 in August. That doesn’t even count for the doctor’s appointments, Emergency Room visits, scans, and never-ending blood tests.

When I first learned I had Cowden’s Syndrome, I went to a website called the Global Genes Project to learn of facts about rare diseases. I learned all sorts of interesting, and sometimes upsetting facts.

There are approximately7,000 different types of rare diseases and disorders, with more being discovered each day
30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the S. population
80% of rare diseases are genetic in origin
Approximately 50% of the people affected by rare diseases are children
30% of children with rare disease will not live to see their 5th birthday
95% of rare diseases have not one single FDA approved drug treatment
Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease

I started out feeling like I didn’t fit in anywhere. I couldn’t understand why all these diseases existed and no one seemed to know or care. I found the “Global Genes Project” motto, “Hope it’s in our Genes” to be a comforting play on words. I identified myself with the denim ribbon, a powerful symbol of Rare Genetic Disorders. My Mom’s friend made me a denim ribbon necklace, and I felt like I had an identity piece, something that represented me.

At first I organized an assembly at my school, and in 4^th grade we gave out denim ribbons to raise awareness. In 5^th grade we had a fundraiser. We sold some T-shirts, and had a small event at the school. The money went to the Global Genes Project.

Last year, a charity was created called the PTEN Foundation. It is the first charity that looks to help people with our specific disease. They want to create a patient database, so people with our Syndrome can be studied and learned about. Then, maybe there will be a way to help us.

As happy as I was about the PTEN Foundation, by this time, I had learned about a lot of other Rare Diseases, and kids, who didn’t have a chance to live and do as much as I can. I promised myself I would always remember those kids when I did any fundraisers.

Last February, “Jeans for Rare Genes” happened at the Hilton Garden Inn. I wasn’t sure I could pull off anything that big, but with a vote of confidence from Borough President Oddo, and my Mom supporting my vision, it happened. 150 people showed up, and we raised over $12,000. True to my word, half of the money went to the Global Genes Project, and the other half went to the PTEN Foundation.

This year, I invited Bob Jackson, my favorite entertainer from Walt Disney World, to come and play piano at “Jeans for Rare Genes 2.” He is here with us today and I am so excited! We also have “Charlie Balloons,” back to help us again, and lots of great raffles from generous donors. This year, I think and hope we can raise a lot of money to send to the PTEN Foundation and the Global Genes Project.

One of the hardest parts of having a Rare Disease is one I don’t like to talk about too much. Middle school is tough enough, but when you spend more time at the doctor than at social gatherings, it gets tougher to fit in. I am glad that with Cowden’s Syndrome I don’t “look” sick, except it makes it even harder for people to understand why my life is so different.

I’ve gained an appreciation for the reality that “everyone has something,” and I work hard at not judging others, because everyone is fighting their own battle. I want to make more people aware that this is the case, and that is why raising awareness for Rare Diseases is so important to me.

The pressure of life, the surgeries, the hospitals, the worrying, the waiting, and the wondering, has done a lot to make me who I am. I don’t wish for anyone else to really understand this pressure, but I sometimes wish more people would understand me.

I have met a handful of people along the way, some in the most unlikely places. These people have provided me support through the pressure, and I am forever grateful.

I know I still have a lot of time to grow into the person I am supposed to be. I love swimming, and drama and singing. I do well in school, and I love being with my friends. I love helping others. I will continue to search out my “Corner of the Sky.”

As you watch the video I have prepared for you, you will see that despite the pressure of life, I will not ever be defined by my disease. I am determined to focus on a brighter future, and to channel my energy into making a real difference in this world.

I look forward to seeing what the future hold, and how the next chapter in my life turns out. I hope to see you at our event next year!

When you’re through reading take the time to appreciate her video, created by herself!