Soft Lock Downs and other things that shouldn’t be…

Published on September 20, 2014September 20, 2014 by beatingcowdens2 Comments

I spent the weekend with my college roommate. She was the one I lived with the longest. She was the one who introduced herself to me the first day. She held me 2 months later as I was wracked in sobs at the loss of my cousin Meghan on my 18th birthday. She learned how to drive in my Toyota. We had fun, shared friends, and life, and got to know each other in deep ways saved for long term friends – or ones you’ve lived with. We gathered enough good dirt on each other to be sure we’d be friends forever.

The last time I saw her was in December. She and her husband showed up at the wake for my Dad.

The time before that was when I made it out to the wake for her Mom.

Somehow we find each other…

And this weekend we hugged first on Friday, in that room in New Jersey, miles away from each of our homes. We cried, and hugged and pulled it together. As the scene was replaying itself again. But this time it was far worse.

College Graduation - 1995 — College Graduation – 1995

It’s not right that we don’t see each other. And it’s no one’s “fault.” And I have a few dear friends I am in the same situation with – whose kids I’d barely recognize if it weren’t for Facebook and Instagram.

We stood together for a while, just the two of us. Interrupted only by people trickling by. We spoke about his fight. His strength. His battle. I told her how much I respected all he did to fight. I told her I was so privileged to have shared a few email exchanges after he took to this blog.

But, from where we stood, in the out of the way corner that defined her comfort zone, we might have even forgotten why we were there.

Although the reality became apparent through the greetings, and the hugs, and the “I’m so sorry…” sincerely sent in her direction, over and over.

Her little brother had died. Her “little” brother was little in age, not in height or spirit. He had a presence about him 20 years ago when I greeted him in our dorm room. When he spent time with us. His charm, and sincerity, and personality resonated even then.

Her “little” brother was 36. Diagnosed with stage 4 pancreatic cancer months ago, he fought with every fiber of his soul, through every treatment and surgery presented. He fought for his family, for his wife of 10 years, and for his two handsome young sons. He fought out of zest and a love of life. He fought for his siblings and his Dad.

I remember when she and I spoke this summer. I remember the conversation because she asked me a question I didn’t want to answer, but one I had needed to ask myself months earlier. She asked how long it had been for my Dad, from the time he was diagnosed until the end. And as I choked over 10 weeks, I instinctively tried to fill that statement with stupid things… “he’s young, there are things he can do…” But, she had heard a number. Just as I had when I had asked the question months earlier.

And I kept an eye on the calendar as I checked in on my friend. And every day I thought of her. I prayed often for her brother, and the family.

Sunday came the text that he wouldn’t make the week.

Tuesday came the one that said he was no longer suffering.

Friday rolled into today, and we sat. Side by side in a standing room only funeral parlor. We hung onto each other’s hands and friends and family alike shared stories, and memories of a guy who seemed to have been larger than life. And my favorite story of the day came when they said he went back to college after he had his boys. And he got his Master’s Degree too. Not for financial gain, but because, “How can I hold my boys to a higher standard than I hold myself to?” Class. His spirit filled the room. There was an abundance of support, and love.

And then we were at this backyard party at her brother’s house. And to the naked eye it could have seemed like any end of summer gathering. But it wasn’t. People were eating, and sharing stories, and passing time together. And two handsome blond boys ran about with their friends.

And then there will be tomorrow. And this young woman, now a widow, will need to press on for her boys. And those boys will slowly come to the realization that Daddy is never coming home. And his sisters to the reality that he won’t be at the next gathering, and his Dad to the realization that his son and his wife have now gone on before him – leaving him with lots to take care of.

36 years old. Father of 2. Dead from Pancreatic Cancer. Illogical. Incomprehensible. Insidious, painful, horror show of a disease. It just doesn’t make sense.

At all.

And there have been so many things that don’t make sense. Ever. They pale in comparison to the horror of a son and a brother, and a father dying out of order, yet still they are the things that keep me wondering about all things.

I think it was Wednesday at work.

I had a first grade class. And the loudspeaker went something like this, “This is a soft lock down drill. Please take all proper steps.”

And just like that 28 first grade students instinctively went to the back corner of my room. The stayed low and quiet as I shut the lights and the smart board and locked the door. They got themselves out of sight of the glass window on my door. And they sat. Silently. And I was stunned. I think it was the 10th day of school. They range from 5 to 6 years in age. And they never moved. They looked to me for a reassuring face. I faked it.

Truth is as necessary as I know they are – I HATE those things. And in this post 9/11 world, littered with countless nonsensical school shootings, and deaths, I get it. And I take it seriously. And the reality that one day we COULD be a target of chaos doesn’t escape me. But that doesn’t mean I have to LIKE it. I don’t like that we need to scare the crap out of these little ones just in case. They are growing up in a wild world.

So wild that when Meghan’s Social Studies homework became to be aware of the news every day, (something we actively have tried to hide her from because there is just enough CRAP in her life) one of the first stories to come across was terror threats in Times Square. She gets things very quickly. And she is stellar at context clues. Dad’s in Times Square every day.

These kids are growing up in a tough world. Grown up worries. Grown up realities. Young minds. It’s so hard to make any sense of it at all.

And so when the ones who are supposed to help -just don’t, well that seems to make things worse.

In the middle of the renovations that swallowed the end of August, Meghan broke her foot. A stress fracture to one of the superficial top bones. I am absolutely not getting “Mother of the Year”” for this, because I was in full on “suck it up we have things to do” mode for the first 36 hours after she banged the foot hard into a misplaced shelf in the basement. That was a Thursday night. And by Saturday of Labor Day weekend, we found ourselves in Urgent Care with a “suspicion of fracture.” Of course being a holiday that simply meant ice, rest and elevate till Tuesday when we could get to the podiatrist.

And we brought the X-ray, and the report. And everyone was very pleasant and we were told that the X-ray abnormality didn’t exactly line up with the point of severe pain. So, clinically it was appropriate to diagnose a stress fracture, put her in a boot, and have her repeat the X-ray in 2 weeks.

So she began middle school days after getting her braces off, with this giant black boot on her leg. And she plugged along for two weeks, and we got the X-ray repeated as we were told to. So, when we returned to the office for the recheck we gave them the disk and the report.

There was some grumbling about the radiology place we went to writing the “worst” reports (but no one told us where to go,) and some discussion in the other room about things on the film that were “probably nothing.” (Doctors should learn some moms have rabbit ears.)

So he came into the room after having had Meghan take off the boot. There was a surgical resident in tow.

“How does the foot feel?”

Meghan, “Much better.”

“Great, there’s no evidence of fracture on the x-ray. You must have healed. Let’s transition you off the boot.”

Please know during this whole exchange he NEVER EXAMINED HER FOOT!

Me, having already read the X-ray report, ” What about the report talking about “bony bridging and bordering sclerosis.?” Does that mean anything?”

“Well, it’s not causing her pain is it?”

Me,”Well she doesn’t have foot pain, per se, but, there is chronic joint/muscle/bone pain that we work on. Could things being out of order in the foot trigger some of this?”

Me,”I guess really what I’m asking is, is anything on that X-Ray consistent with Cowden’s Syndrome?”

“Well does Cowden’s Syndrome cause bony overgrowth?”

Me, “You’re the doctor, I am asking you.”

“But you are far more familiar with the syndrome than I am.”

Me, in my own brain, Thanks to Google University, and then out loud, “Are you seeing this? (pointing to the extra bone that juts out of her left (and right) feet) on the X-ray?”

http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=201 ( You may have to cut and paste the link)

(THAT IS A PAGE FROM A WEBSITE, reviewed by a doctor at the cutting edge of PTEN research. It took me less than 10 seconds to find. It verifies bone cysts connected to Cowden’s Syndrome, and had anyone asked I would have been able to tell them about the “non-ossifying fibroma” in the left femur that scared the crap out of us when she was 2.)

“I don’t think so, but you should probably have a specialist look at that. I don’t need to see her again.”

GOOOOOOOOOOD THIIIIING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And I turn to see the tiniest tear in the corner of Meghan’s eye…. “Mom, he never even touched my foot. He has no idea what the problem really is. What’s the point of wearing the boot? I have to trust my own body cause they don’t know anything. I think its healed and the boot is hurting my knee.”

Fair enough.

She’s the closest I have to a doctor, and the thing that has made the most sense all week.

When you have a diagnosis that leaves you prepped for cancers of all types at all ages and in all places, there are things that rock you to your core.

Sometimes living with PTEN Hamartoma Tumor Syndrome is like living under the constant threat of a terrorist attack. But the terrorist is cancer.

You get to live in fear, or live your life.

You get to try and make sense of things, or run with them anyway.

With the motivation of those – not connected to us by Cowden’s, but connected to us by life – who have fought the good fight, I try to stay focused. To live life instead of hiding in a corner, or some days under the bed with the lights off…

So many things, so many tragedies will never make sense.

But it’s less about making sense, and more about being sensible. It’s about instinct. And love, and compassion. And cures. I am a big fan of cures.

Tonight, wherever you are in your life. Whatever is rattling your world, I ask you to stop for a minute.

Say a prayer for those two little boys who will begin to know that Daddy is never coming home.

Say a prayer for a family who lost a 36 year old high quality man too soon.

And please. In this world that makes no sense. Do something logical. And kind. For someone. Cause we ALL need it.

“A tranquil mind is not a little gift…”

Published on August 22, 2014 by beatingcowdens1 Comment

Growing up I didn’t spend a lot of time with my father. Despite some really fun day trips, I didn’t really know him well at all.

My Mom married an incredible guy when I was in high school, and there was this love and support that was there every day. We got to know each other quickly and well.

And that’s my tale of two fathers.

Ken has been a constant in my life since I was 15. He loves me like his own, and has treated my as such, without fail, and in all things. I adore him.

Dad struggled after Vietnam, after horrors that I can only imagine. He struggled to find his way, and to find the balance. He married twice, and had three kids, then he spent 10+ years in a long relationship. He lived all over. He worked to add his charm and personality to nightclubs all over NY. He knew how to live on top of the world, and at its bottom.

Several years ago life brought him back local, and for the first time that I could remember, he wasn’t working nights. We spent more time together. He came to dance recitals and swim meets for Meghan. He came to my house for gatherings, and just to be with us. We liked having him around. All of us. Even the dogs.

I got to have two “Dads.” While one is called Ken and one was called Dad, the terms are synonymous. Two very different people. Very lucky girl.

And I used this time to catch up with Dad. We would talk on the phone a lot, about anything. Sometimes he would talk. And when he did, I listened. When he really talked about old stories I sometimes even took notes. Because I didn’t want to forget anything. I don’t think he would have loved that idea. I suspect he would have thought it wasn’t worth my time. But, it was.

Lots of times I would talk. He was a really good listener. He knew when to interject and when to stay quiet. He knew when I needed to hear advice, and when I just needed a sympathetic ear. Sometimes I get overwhelmed. And I just need to offload, without judgment or solution. I called every Friday that I grocery shopped. Sometimes we talked for hours.

And the years saw a transformation as he was being treated finally for the PTSD that had tormented his every move since the war. He didn’t talk much about it, but every once in a while… it was my turn to listen carefully. And I did. Gratefully.

Then the conversations started to include talk of him being tired. Looking for energy. Millions of excuses listed, tried, tossed. Then there was the jaundice. And the blockage. And the pancreatic cancer. And within about 10 weeks my sister and brother and I said goodbye to our Marine. “The few, the proud…” to the very end.

Dad was a philosopher. Sometimes I was right with him. Other times we didn’t quite agree. But, it never mattered.

And in the weeks before his death I became his healthcare proxy – because I do healthcare all the time. And I got his medical records,and put them in a binder, and Dad laughed because he somehow knew I would – and so did my brother and sister, and my siblings and I took him to the fancier hospital. And we asked some questions. And we talked a lot. But, it was done. In the end it was just time for it to be the end.

But I was not, and am not ready to let go. Maybe that’s unhealthy. Or maybe that’s keeping the memory alive. Whatever.

It took weeks to clean out his small apartment. I touched every paper. I read, and sorted, and filed. I made more binders, and file folders. I shredded only with great care at my own dining room table. And as I sorted I found little scraps of paper. Little random thoughts. Notes. Scribbles of Dad’s. So I gathered them all together and I taped them onto large sheets and I saved them as a PDF for my brother and sister. And I laminated the originals for me. And sometimes on quiet nights, when my mind is busy and I can’t sleep, I peek through those notes. Almost like a chat with Dad.

Tonight I flipped open to the words, “A tranquil mind is not a little gift.”

And I paused. And I smiled. Dad’s mind was not always tranquil. But in the end it was even through physical torment. He had lived enough emotional torment to know “A tranquil mind is not a little gift.”

I am a worrier. Not a shock to those who know me even a little. But, also not unfair, all things considered.

This was a light week here for doctors. Only 2 appointments and one argument with a disrespectful office manager that led to a formal complaint. Oh, and one random really large pathology bill that was clearly not done right. The appointments were fine. One was annoying in the leaving at 7 for an 8:30 to be taken at 10:40 to get home around 2, but all things considered it was smooth. The other was with the gastro doctor who wants another visit to the ENT to peek down at the esophagus. (If only I could get a scheduler to do these things…) And the fight of course was with my doctor. The office staff of a vascular surgeon for a procedure I definitely need soon. I’m in the market for a new vascular surgeon.

But since we had some time, and we were looking for some light entertainment, we replaced the bay window in the front of the house.

So after a slightly tumultuous, but altogether fun trip to Disney, we returned very late Tuesday, slept most of Wednesday. Did lots of laundry, sent my husband to help out at my sister’s on Thursday, and Friday got ready for the new window.

Not that we WANTED a new window. We just bought the other one 14 years ago when we moved into the house. But about 2 years ago there was this little black spot that kept growing. And we called the company to look at it, but it turned out there was a class action lawsuit we had to participate in and I filled out miles of paper and it took almost a year to get someone to the house. By the time they came the little black spot was large and clearly water related. So the nice man took pictures and the conversation was about replacing the center of the window. Until they called the next day and said the black spot was in the wrong places, and the window would have to be replaced. But since the window was over 10 years old we’d get a percentage off the cost for the window and installation. Um, well that price was so wild we bought the window ourselves. And Ken and Felix and his friend John got it to our house, and finally Saturday all the planets aligned to put it in.

It was supposed to be a half day job. It was supposed to fit right in. And Felix, and Ken, and John, and Bobby, and Brendan worked their bottoms off. But, there was some cutting of walls, and by the time it was all back together on the outside it was well past 11 pm. That wasn’t the inside.

I like the house neat. Actually I need the house neat. And you can tell me whatever you want about how it doesn’t always happen like that, or I have to give it up. But I can’t and I won’t. Because it’s a control thing. I know it. I’ll own it. I can not control Cowden’s Syndrome, or any aspect of why Meghan feels cruddy so much of the time. I can not control random illnesses or natural disasters, or unscheduled hospitalizations and surgeries, or any other obstacle that is going to come into my way. But, through much experience I have found it markedly easier to handle every single crisis with a clean house. Something about having order in the home, gives me some sense of peace when the waters are very rocky.

So, at 11 on Saturday night I looked around and began to freak a bit. That’s when we decided to paint. It was time anyway, and the house was on its ear so to speak. So I prepped the room and there was paint. And the living room and dining room are back together, but the hall needs a coat too… and you get the idea.

Not to mention that a few weeks ago Meghan began the move from her room on our floor to the upstairs of our cape. There are two rooms with that peaked roof and lots of floor space. (There have to be some perks to being an only!) She has a bedroom, and a room with a desk, and all the things she loves. It has taken 4 weeks to clean out and move her, but we finished today. And as I sat in her room I cried a little. I remember distinctly being 9 months pregnant and crying in that room (see a pattern?) I was so scared. I was right to be scared. Some scary things have happened in the last 11 years. This time I know the move upstairs will be far less painful than the one she’s sure to make just a few short summers from now.

It was a good time to move. Junior High starts in just a few days really. A whole new school. A new chapter. Turning point. And as she decided what to keep, toss, and donate, her personality began to shine through. With just a few pictures left to hang, she has created an atmosphere that is representative of her. Now to keep it clean and clutter free… 🙂

But nothing is without event, and there is no time when I am fully at rest, as I frantically tossed my flip-flops off when I heard her cry out,” I NEED YOU!” I arrived at the top of the stairs to find her crouched over grabbing a leg that has been giving her trouble for days. One too many trips up the stairs, or on the floor sorting things? Who knows. Just like the headache that’s been around one day too many. Sinuses, allergies? God, I hope so.

At some point I’ll have to go to sleep tonight. And tomorrow will be for more appointment making, and dealing with random bills. The side of the house is littered with trash. There are 10 bags being donated Saturday morning. The clutter and dirt are disappearing simultaneously – with LOTS and LOTS and LOTS and LOTS of work. But my sanity is being restored.

And while this is far from how I would have chosen to spend this week – so close to the end of summer, Meghan got some time in with some friends so it was in fact a success.

So much flux. Moving Dads things in earlier in the year jostled the basement. Moving Meghan upstairs caused some purging. And slowly everything is coming together as it always seems to.

I think of how many times I would have called my Dad this week. The number is too high to count. I miss him every day.

He told me once to keep writing, to just keep letting it all out no matter what I thought of it. So I do. And I think about how he would have respected my need for order, while encouraging me not to sweat the small stuff.

Tonight I think calls for a glass of wine, and some reflection. Gratitude for an almost “normal” week with largely “normal” problems. Feeling grateful that my mind, while always a flutter, is somewhat tranquil, and…

“A tranquil mind is not a little gift…”

Thanks for the chat Dad. I miss you. A whole lot.

Life begins… at the edge of your comfort zone…

Published on August 15, 2014August 15, 2014 by beatingcowdens5 Comments

Roller Coasters

Nope, not us. No way. No how. Terrifying. Not going to happen.

Until last week.

Something clicked inside her head, and she decided that she had come to conquer.

There was a pit in my stomach when she first declared she was going to go on Space Mountain. Roller Coasters have never been my thing either.

But, she even decided who was going to sit in front of her and behind her. No getting out of it for me.

She told me that she had been through a lot in her life. And that she shouldn’t be scared of a ride. True. There was that quote by Eleanor Roosevelt we had read, and referred to so many times.

No not the other quote, “The only thing we have to fear is fear itself.” – FDR

This one, “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” – Eleanor Roosevelt

The first time we were both a little scared. Then there was the second time. And by the third time she owned it.

“Rocking Roller Coaster!” she declared.
And so we headed to the Aerosmith ride that wasn’t even on the consideration list a year ago. Twice. I went too. And I really didn’t mind.

“Life begins at the edge of your comfort zone…” Words I am learning to be truer each day.

And so in the week that was, we rode Space Mountain, Aerosmith, Big Thunder Mountain, Seven Dwarfs Mine Train, Test Track and even the Barn Stormer together. I did Star Tours too, but virtual reality isn’t really agreeing with me anymore. Maybe too much reality?

So she went on Mission Space with her Dad – twice. Once on the beginner level, then on the advanced. And they rode Splash Mountain too – just because.

It makes me happy to see her conquering fears. There are so few of them, that I am hopeful nothing like a roller coaster ever stands in her way.

And as I reflected on the idea that this kid, this amazing kid had brought me past a fear that had plagued me for decades, I found myself hopeful that she will always dance…

“Never settle for the path of least resistance… I hope you dance…”

“I Hope You Dance” – Lee Ann Womack

I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you’ll give faith a fighting chance,
And when you get the choice to sit it out or dance.I hope you dance….I hope you dance.

“It is only with the heart that one can see rightly…”

Published on August 13, 2014 by beatingcowdens4 Comments

There is something about having a kid who struggles, whether physically, mentally, emotionally, or in any other capacity, that forces you to open your heart and mind to things you may never have “seen” otherwise.

We are blessed.

We have a beautiful, witty, articulate, charismatic and spunky young lady.

She knows pain, and she knows it well. And some days that pain is like plowing through a stone wall, while others its like walking across a pebbly yard barefoot. But, there is sparsely a day with no pain.

She knows competitiveness. Although she would like to be the fastest runner, she is starting to work towards a more reasonable goal in a no impact zone – the pool.

She knows intelligence that book smart children know, and she knows the perspective that few adults can master. She can look at other people and want to talk to them. She can wonder about them. She can empathize with them.

She knows what its like to be sick. And in surgery. With IVs, and needles, and scars, and recoveries. She knows what it’s like to never be “well” only watched.

She is learning, step by step, that “well” is more of a state of mind, than a state of being, when each week is peppered with some type of appointment.

Yet, she knows that even at the depths of her own Cowden’s Syndrome battles, there are others. With and without our syndrome – who fight a battle unbeknownst to us.

Meghan doesn’t use a wheelchair at home. For this I am grateful. Although as I teach my daughter about homelessness, and how we can never be too sure from where they came, or whether it could through a series of unfortunate events, become us. We practice a deep understanding of reality in Disney World.

Meghan’s pain, so much of it, stems from repetitive motion. Too much walking, any running, too many stairs, too much kicking or pulling in the pool… all of it has repercussions. So Disney, by it’s very nature, and its wide landscapes requires much walking. And, as we try every year, even with a little here and there – the pain is deep and inevitable.

So for that week every summer she gains an even greater perspective. She lives in a wheelchair. With all the inconveniences that come along with it, in an effort to save the needs from irreparable pain, and the trip from being a wipeout…she rides.

And on the first night after the vomiting I watched from a distance, as Felix helped her onto the handicapped ramp on the bus. And there was a knot in my stomach as I watched my girl get strapped into the bus in the wheelchair. This beast, this Cowden’s Syndrome we fight. Well we fight to win. But who can know?

I stop myself from wondering too far ahead and I reflect. On the old me. The me who used to look at people in wheelchairs riding buses as an inconvenience. A delay in my precious time. The me who used to judge and try to guess why they would need a wheelchair. The same me who used to judge a lot of things.

We will unpack.

The wheelchair will be stored. Hopefully for a very long time. But, it will be there, in the basement. In case. In case we need it for anything. Because the pain, well it’s always there.

Fortunately, she is in a position where her stubbornness still has the power.

And I will think, as I drive her back to swim practice in a few weeks, about the other mothers. About the ones who wish their child’s wheelchair use was temporary.

And I will think about the phone call I got this week. The one about the AVM growing in the knee again. Timed on the same day she was vomiting in the hotel room. And I will be grateful that we don’t need surgery right now. And I will be grateful that it is not in her head, or any other life threatening spot.

I am humbled.

By her grit. By her stamina. By her determination.

I am grateful.

For the opportunities afforded to my girl.

We will find the balance. We will pay it forward.

I don’t even really remember the judgmental me.

I am too busy working on

BEATINGCOWDENS!

Avocado and Isagenix – What’s in YOUR suitcase?

Published on August 12, 2014August 12, 2014 by beatingcowdens2 Comments

It’s been almost two weeks – a long time for me not to write. My head is spinning with things I need to get out in my blogging “therapy” sessions.

As I sit in Orlando International Airport, delayed by hours on the sunniest evening all week, I find myself reflecting on the week that was.

Even though we have been at Disney 7 years in a row, and even though we probably should have stayed home to lick our wounds this year, we threw caution in the wind and decided there would be plenty of time to make money, and time to make memories isn’t always there.

Plus, in 2014 alone there was that thyroidectomy in February that threw my girl’s body into some wild unbalanced state, and that week in May when we learned all about gastritis. (Caused by the pain medicine she had lived on for years.) So after spending months trying to get her stomach back in balance, and juggling the gluten, dairy, soy free, and largely preservative free diet, with the new restrictions of no citrus, no chocolate, no tomato, we contemplated cancelling the trip. But we knew that would seem more like a punishment than a precaution. So the reservation held – August 5 -12.

In the week leading up to the trip time seemed to fly by. I barely got her settled with enough clothes, got us a functional suitcase, and got us packed in time. And as we were packing I began to gather food. See, when you travel with a kid with food allergies, you don’t travel without food – ever. Even though Disney is “the happiest place on earth,” and even though almost every chef we encounter is masterful at creating meals to please her very restricted palate, you still need to pack the “staples.” There has to be a supply of dry fruit, cereal, pretzels, applesauce, cookies, and bars. In the past we also always packed tomato, and barbecue sauce too. Every morning we would fill small containers and have it to flavor anything dry along the way. Except this year tomato was equal to painful reflux, and we weren’t about to try it out as we traveled.

So, we went to the next best thing – avocado.

I have never been a huge fan, but my Puerto Rican husband gently introduced healthy protein into her diet and it was so well tolerated. She liked it to moisten food, and there were plenty of days she ate a whole one. So, into the suitcase went a container full of 8 avocados.

Use what you know.

And in another container nearby were several packages of Isagenix shakes. Those, I had packed with intention of using them myself. So glad I did.

When we arrived in Orlando Tuesday the 5th after a 6 AM flight, it was 8:30. We rode the Magic Express and got to the hotel by 10:30. At 10:45 the luggage arrived, and by 11:20 we were unpacked and on the way to the Magic Kingdom.

And find the Magic we did.

We spent the day riding, and laughing, and watching and taking in all the wonder around us. We had lunch at a trusted favorite, the Liberty Tree Inn, and the turkey, stuffing, mashed potato and gravy were prepared to perfection. Her stomach was happy. We were happy.

Dinner was with some old friends at the Contemporary, and we willed the time away searching for “Hidden Mickeys.” The “Fab Five” greeted us, and the chef took us to the buffet. I tried to choose carefully, as the selections seemed a bit questionable. I was assured they were within her dietary restrictions. And there was the drink. We asked for it diluted, as it wasn’t her normal fare. But he was busy and I suspect by the third glass the waiter had forgotten to dilute it. And there was the GFCFSF sausage… and…

By the time we sat for the electrical parade we were all tired, but she said she felt something in her throat. She asked me for food, and even as I handed over the pretzels I should have known better.

She slept fitfully. So much so that I kept waking to check on her.

“New room… new place.” I kept telling myself…

And in the morning when we got up to leave we just about made it to the lobby when she said she couldn’t go.

“Houston… we have a problem.”

We exchanged those “uh-oh” glances – Felix and I. And we followed her to the room.

And barely did she make it in the door then the familiar violent vomiting from May returned. So much. So forceful. Like her body was not going to stop until it got rid of every single offending morsel in her body – whatever it may be.

It went on for hours in our hotel room in Walt Disney World. And every time it seemed to calm and we tried water, bread, pretzels… it all began again.

We called our GI from home who instructed rest. And we looked at our girl laying so still and so sick on the bed, and we searched out the travel insurance brochure. After two hours on the phone with more people than I care to count, we arranged for a doctor to visit the hotel.

And while we waited the staff had seen my tears, my desperation, and prepared a bag with some balloons, and coloring books, and pins and UNO cards to pass the time. There are good people.

But by then – at 5 – she had been without food or drink for 5 hours and was starting to look better.

He was amazing, and unusual, and smart, and introspective. And he sat with us for a good hour learning about Meghan. Then he sized up that she was not dehydrated.

“What do we do?”

“Go with what you know.”

Not so easy hundreds of miles from home. But, she was hungry. And there were avocados. And my eyes hurt from crying in absolute frustration that we had just breached her forever “doctor free” zone.

Then he asked what she drank and we said “Coconut Milk.” And just like that he was out the door headed to a whole foods 6 miles away. HE took money only for the milk itself, not for his gas or his time. And we had options.

WHO does that? This stranger… this “standby doctor” so moved and so interested in helping…

So there was avocado, alternating with coconut milk at very deliberate intervals. And once the avocado held itself in place we had a few options.

“Can I have a shake?” MUSIC TO MY EARS…

A half shake in 8 ounces of coconut milk. Followed by a half of an Isagenix meal bar.

By 9 she was well enough for a ride around the hotel.

By the next morning we cautiously resumed our trip. With Isagenix, and an avocado in my backpack all day.

Felix said we should call her our “rubber band-” stretched until you think she’ll break, then she finds a way to spring back!

Compassion Saves the Day!

Published on July 25, 2014July 25, 2014 by beatingcowdens2 Comments

Instinct.

I don’t know why I second guess her instinct. Maybe one day I’ll learn.

We arrived in Manhattan early. We dropped Mom off so she could get to her appointment. We parked the car at a better rate than I expected. We walked a few blocks nice and slow. And we arrived at our 9 AM appointment by 8:35. Paperwork completed – we were sent down to the waiting area for MRI.

An empty room, and a few minutes to spare, I stepped into the lady’s room. No sooner did I get in there than I heard Meghan speak. “Calling us already?” I wondered.

I joined her in the waiting room and the shell-shocked look on her face was a mix of horror and confusion.

“Mom, I don’t want him to stick me.”

“Relax, you don’t know. He might be very good.”

“I’m telling you Mom, this is NOT going to go well.”

And, as I tried desperately to calm her rising anxiety, we waited.

We got called back and locked our things in our locker. The technician sized her up and decided her carefully planned outfit would work and she didn’t need to change. Then I asked him if I had to remove my jewelry.

“You can not go in.”

Calmly, ” I am sure I can, she has had countless MRIs and I have stood beside her for every one.”

“I will have to ask my boss. And, we have to see if the braces are OK.”

“But, I told them about the braces when I booked the appointment.”

“Well this is a very strong magnet.”

And with that he led Meghan inside towards the machine and she promptly backed away.

“Mom, my braces!”

To which the technician replied, “You’ll have to reschedule.”

And then the anxiety took hold and my girl began to shake.

“I am very very angry,” I began in my “not so nice” voice. “You have no idea the amount of planning that went into this, and the amount of worry that has been expended by my daughter.”

“I understand…” he began, in his patronizing, not very helpful voice.

And I honestly don’t recall if he got in another word, because Mamma bear was loose.

I can’t even quote myself, because I was that flipped out by this man who dared to tell me he understood. See, I can be reasonable. I really can. You can tell me you are sorry. But you can’t tell me you understand. Because just like I don’t claim to understand anyone else’s life – no one should flippantly tell me they understand. At least not until they have seen their child through at least 11 surgeries, countless procedures, ridiculous numbers of blood tests, multiple hospitalizations, and countless sub-par phlebotomists. Not until they have sat awake at night calming their child’s trembling fears by touching them – just so they stop shaking in their sleep. Not unless they know what its like to have candid conversations about pathology reports and the virtually insurmountable malignancy fears. Unless they have heard their young girl ask if her children will one day carry this mutation that has caused her so much heartache. Unless they have heard their 10-year-old consider whether its worth it to have their own children… one day.

See sometime two weeks ago we went for a routine follow-up at the vascular surgeon. He did a sonogram of the AVM that caused so many years of heartache, and surgery in 2009, 2010, 2011, and has been blissfully quiet since the last surgery there in February 2012. And he saw some “spongy” spots in there that needed to be looked at. So we scheduled the MRI, knowing that we “saw this coming.” The Celebrex had been destroying her stomach and controlling her knee. The ultimate catch-22. So the worry was about the MRI, and the needle for the contrast, and the wonder about WHEN, not IF the next knee surgery will be.

And all this was bottled up inside of me and came spewing out at this man who dared to casually tell me he understood what it meant to”reschedule” an MRI that had been deliberately scheduled based on time and location to correspond with a trip to the oncologist, and spare her an unnecessary day wasted at a doctor’s appointment.

And as I cried for a supervisor, Toni came flipping around the corner. She sized up the situation, gave Meghan a blanket, sat her down, and told me she was going to fix it. And she did.

I have never in my life seen a supervisor in any capacity who was beyond competent, and extraordinarily compassionate. She got INTO A TAXI WITH US, and took us across town. She walked us into the facility, the entire time reassuring Meghan that she had a special nurse who would handle the needle. I saw the look in Meghan’s eye that said, “That’s what they all say.”

But Toni didn’t lie. Within minutes of walking into the facility we were greeted by Allison, and Manny. Both talked to Meghan. They looked at her arms. They told her a blind person could catch her vein. They told her it would be a butterfly. They told her no IV. They let her pick who would do the contrast dye and did it in such a reassuring way that she knew neither would feel badly if she picked the other.

MRI Dog (Rocky) always helps too... — MRI Dog (Rocky) always helps too…

Then Michelle and Chad made her feel like an old friend. They were so warm and comforting. They positioned her just so, and reassured her in such a way that she took this incredible deep breath. And when Allison came in to give the contrast dye, Chad held one hand, and I held the arm and she never even felt the needle. Chaos turned into probably the most successful MRI to date. Sweet relief.

We had NEVER been in a machine like THIS before!

But we left the facility only for me to realize we were now clear across town without our car. I held my breath and hailed my first cab. (Put that on the bucket list, and took it off in the same day!)

An hour with the oncologist, always plays with my mind a bit, but there will be time to process her recommendations for vigilant screenings necessary with Cowden’s Syndrome.

We left at almost 1, feeling quite like we had already lived several days. Then there was this matter of the “Treat Shop” on the upper West Side. I had planned to go because it was so close to the first MRI site… but not too close to our car. I walked, she limped by the end, and I am sure I will pay for this for days, but we made it. A small store full of glorious Gluten Free treats. And there were 6 dairy and soy free options as well. Heavenly – and my daughter said, “worth the pain!”

An afternoon playing with a friend from school, and the sound of girls giggling, made the horrendous morning, and the most unforgiving traffic I have seen in recent memory begin to leave my neck and shoulders. As the tension began to release I found myself reflective. Hopeful. But still unsure.

Watching her at ease on the couch I am reminded not to plan. I am reminded to trust Meghan’s instincts. I am enjoying the cool breeze, and for the moment the uncorrected mess.

I am grateful for Toni, and Manny, and Allison, and Chad and Michelle. If only everyone took their jobs so seriously. Healthcare, and the world for that matter, would be in a much better place.

Even if just for today they made BEATINGCOWDENS a little easier.

Scars…

Published on July 19, 2014July 19, 2014 by beatingcowdens3 Comments

There are days I forget.

I forget that it’s not just Meghan, but also me with this rare disease.

As a matter of fact, it’s actually uncommon for me to remember.

Maybe it’s survival. Maybe it’s maternal instinct. Maybe it’s denial. Maybe it’s some combination.

But then there are days that it smacks me right across the face. And it ~~stings,~~ no, actually it’s more like a scalding burn.

I post mostly about Meghan. She’s my hero. She’s my inspiration. She motivates me to be a better person, every day. But, if I really want this blog to be transparent, and I really want the truth about our experience living with and beating Cowden’s Syndrome to be out there, sometimes I have to allow my own inner self to be exposed.

I feel good. I really do. Aside from a little lag from my thyroid, I am feeling better and stronger than I have in years.

But there are the scars. They hide behind my clothes like a little secret. Cause people forget. And that’s what I want, because most of the time I forget too.

But then I look in the mirror, and I see the scars across the implants replacing the diseased breasts removed in the nick of time. And my shirt doesn’t sit quite right. And it’s probably my own fault, as I refused the tissue expanders necessary for a proper reconstruction. I didn’t have the time, or the energy, or the desire, or the stamina to put myself through the frequent fills, the repeated pain, and the additional surgery necessary for the sizes to be equal. It just wasn’t worth it to disrupt our lives longer.

I saw the plastic surgeon last week. My two-year follow-up. Hard to imagine. She gently reminded me again that she could even things out whenever I was ready. No cost thanks to the positive pathology for breast cancer, and the genetic mutation. No monetary cost. I’m not ready. Yet.

I saw the breast surgeon last week too. I see her every 6 months, so she can make sure nothing sinister is growing behind those implants. The reality and the reminder that as fortunate as I was – I still had breast cancer. And once you know for sure that those malignant cells had life in your body, you never look at things quite the same. “No lumps or bumps,” she happily reported. “See you in 6 months.”

I can’t wait.

And there are the lymph nodes in my neck. They were checked last week too. Sonogram. As long as they stay stable, we can leave them alone. “But, if they grow…” she reminds me every time. Six months for her too.

And my legs. Fitting into the smallest size they have ever in my life the veins are protruding again. The PTEN diagnosis, known for enhancing vascular issues, perhaps the explanation for the vascular problems that have caused 2 operating room visits and 5 in office procedures since I was 23. But, it doesn’t really matter I guess. The legs start with a familiar heaviness. Then there is the throbbing. The last thing I feel before bed, and the first thing I feel after the alarm gets shut down. And the pulsing – like I can feel the blood moving the wrong way through the broken veins. And the giant bulging, from groin to ankle, that makes it a little less fun to buy the shorts in a size 2. I switch to “Bermuda” length and some sundresses. I wait for the word that GHI has approved another vascular procedure.

Not to mention I saw the GYN Oncologist too. Everything ramped up a notch with the “Cowden’s Syndrome” label. There are no “regular” visits anymore. Even with that benign pathology, it’s a forever commitment to the “Clinical Cancer Center” of the hospital. Two years since the hysterectomy too. Time marches on. You can barely see the scars from the laproscopy. But I know they are there too. A few inches under the implant scars. Reminders of the year that changed my life. Our lives.

The week finished with genetics. Our geneticist – found by an incidental internet search at the recommendation of our physical therapist, is a gem of a man. He greeted me with a hug and a smile, and exclaimed that I looked better than I did at my diagnosis. Then he drew my blood. More genetic testing. This time not because of the Cowden’s Syndrome. This time, it is to fulfill the wishes of my father. Wrapping up a genetic counseling visit I completed in April, and after consent was received from GHI, the vial of blood was drawn to test for the markers for pancreatic cancer, the killer of my father, and paternal grandfather, as well as about 15 other markers I probably don’t want to know about. We both said a silent prayer that the test yielded a whole lot of nothing. We hugged again. It’ll be about 6 weeks.

So this morning my shirt didn’t fit quite right. The indentation on the right side was causing the shirt to fit lopsided. And the vein bulging out of my right leg, especially just above the knee was a little too much for me to take. I struggled with my tears, trying desperately to hide them from my extraordinarily observant soon- to- be -11 year-old.

This is the reality she knows we share. Yet, I want so badly to help her maintain some of her youth. Worry free innocence taken with the words, “You have a mutation on the PTEN gene…” and years of her own surgeries have stripped her of some of the privileges given only to the young. There is something about 11 surgeries with no real end in sight, that can leave you a bit anxious.

It only took a minute. Although it seemed longer. A hug from my husband. My ever patient, loving soul mate, who makes me feel beautiful just by the smile in his eyes when we kiss. And it was time to shake it off.

But not without first acknowledging that maybe that was quite a few appointments for a week’s time..

When we got in the car to head to the doctor, the Christian station was playing one of my favorite songs, “Fix My Eyes,” by For King & Country.

There are no coincidences.

And as we sang along, I looked in the rear-view mirror.

“Fix My Eyes”

“Hit rewind
Click delete
Stand face to face with the younger me
All of the mistakes
All of the heartbreak
Here’s what I’d do differently

I’d love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on youI learned the lines and talked the talk (everybody knows that, everybody knows that)
But the road less traveled is hard to walk (everybody knows that, everybody knows)
It takes a soldier
Who knows his orders
To walk the walk I’m supposed to walkAnd love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on you….”

Click the image to hear the song…

We spent Friday looking for sites for a fund-raiser for “Rare Disease Day 2015.” We met a lovely woman who was surprised we weren’t raising money for us specifically. We explained that we were grateful. I feel well enough to work. We have good medical coverage. There are so many not as fortunate.

When it gets to be too much, I know to fix my eyes on things far beyond the mirror. I have a greater purpose right in my own house. And WE have a greater purpose.

We are BEATINGCOWDENS… together!

Coaches Change Lives

Published on July 13, 2014July 14, 2014 by beatingcowdensLeave a comment

I know that teachers have the power to change lives, but as my girl gets to the middle school years, I am really starting to think the power is with the coaches.

I have always wanted my daughter to be an athlete, and truth be told, THAT didn’t take much convincing. She is a natural competitor. She loves the thrill of racing. competing, and performing. She has done some time in soccer, with some fantastic coaches, who worked to nurture her. She loved her time dancing. But, her body, much to her chagrin, was not made for pounding. The knees, and hips, and major joints couldn’t handle the impact.

So we headed to the pool. Her first experience with any competitive swimming came at the age of 9, on a CYO team we were connected to through a friend. Soon after that season she tried out, and was accepted to join a 12 month team. She began with them in July of 2013. And, while the desire to compete was always strong in her, it seemed there was constantly something standing in her way.

We started the year with the goal of making 2-3 practices a week. But, in the fall things took some wild turns, and there were migraines, and neurologist visits, viruses, and fatigue, and strep, and one obstacle after another. There were weeks one practice seemed like a feat. Meghan had a hard time finding her place, because she wasn’t there much. And the cycle continued. During the fall my father became ill and passed away quite suddenly in December. That set her into a bit of a tailspin. Then in the end of December a routine thyroid appointment told us there was much to be concerned about, and that she’d need her thyroid removed.

Ironically this is about the time she started to enjoy going to practice. The coaches were intelligent, and compassionate. The kids were all finding their way.

Meghan responded so well to the two young women who coached her most often. They understood her medical trials, but treated her no differently. They pushed her just enough, but never too hard. They listened when things hurt, and gave her ways to work through it.

She mustered the courage, and stayed healthy enough to make it to her first big meet in January. She was awed by the whole experience, and truth be told, I don’t even remember what she swam. Like so many firsts, it was about getting it done.

Thyroid surgery in February sidelined her for a few weeks. And, long after her body had healed physically, her thyroid hormone levels never seemed to take to the synthetic replacements. An emergency room trip in February – 10 days post op, led to an overnight stay and the elimination of the synthetic calcium from her diet completely.

But, by the beginning of March she headed back to practice. Her coaches welcomed her, encouraged her, and built her up. She started making regular practices, and swimming CYO at the same time.

Then, in May her body quit again. Severe gastritis landed her in the local hospital for 6 days. She missed her last CYO meet. She underwent extensive testing, and the blame for the erosions in the esophagus, and the inflamed, bleeding ulcerations in her stomach lay with the Celebrex – the very medication that was allowing her to function through the chronic pain that plagues her.

Crossroads.

The elimination of Celebrex, and the discoveries of the damage it had caused in her GI tract, led to changes. Her already Gluten, Dairy, Soy free diet, became also free of beef, spices, chocolate, and the other tastes that had carried her through. Then there was the pain. The constant awareness of pain in all her major joints was playing mind games with her. The pain – very real – could be fed nothing to control it. Oral pain meds were, and still are off limits.

Weak from her stay in the hospital, it took another week home before she could even consider a return to practice. And when she did, she was angry. She was angry at her body for the pain, and angry that she couldn’t keep her old pace. She was just angry.

But the coaches, they were supportive. They let her take the lead. They let her take her time. She rested when she needed to. She left early when she had to. And finally, just about 3 weeks ago she started making full practices again.

The pain is a daily battle. One she is fighting with mental power to overcome, and the best nutrition we can offer to her.

Last week she made 4 days of swim camp with the varsity swimming head coach at the local college. 6 hours a day. She slept well. She was sore. But she was determined.

So, when we set off for the meet upstate yesterday, my expectations were low. I was hoping she would finish without disqualifying. 100m of butterfly is not for the faint of heart, especially in a 50 meter pool. But she did it. And closed in with a time .67 seconds away from qualifying her for Junior Olympics. Junior Olympics, the best of the best swimmers in her age group. An honor just to make it in the door.

We went back today to give it one more try, but it wasn’t meant to be. This year.

Close doesn’t cut it. This I know. Except when you consider that she got THIS close, despite all odds, it’s something to consider. Meghan’s synthetic thyroid replacement is not working. It’s just not. At our last appointment we found out her TSH level – the Thyroid Stimulating hormone has increased by over 300% in 6 weeks. Post operatively it remained about a 10, it took a brief dip to 6, and then over a 6 week span increased to 20.5. ABNORMALLY HIGH is what it says on the lab report. That, combined with her low levels of T4 means that the work of the thyroid, that can not be done by the gland that was removed, is not being done by the medication, which has just short of doubled since February. The endocrinologist is baffled. I’m concerned, but not shocked. He agreed to research alternative medication, but he has, “never had to prescribe one before.” For those of you not thyroid patients, you are considered hypothyroid, once the TSH goes above 5. Most people feel human between 1 and 3. I function best when mine is .5. At 20.5 you would likely not find me out of my bed. You would certainly not find me at swim practice.

“Mind over matter,” we say.

“Everyone has something,” we say.

“Show the world you are better than Cowden’s Syndrome,” we say.

And she does. All the time.

On the way home we talked a lot. We talked about obstacles, and overcoming. She started to set goals.

And then, there was this text from her coaches.

“”Hi Mrs. Ortega. (We) just wanted to send you guys a text and let you know how proud we are of Meghan. She is such a pleasure to coach and is always looking for ways to improve and be her best. Swimming isn’t only about the times, it’s about the people and having the opportunity to create and share memories, good and bad. Meghan has so much drive, and goes through more than we can even imagine. She is truly amazing to go through everything she does and still push her body in the water. Today was just the first time. We know there will be plenty more opportunities for her to make cut times, and we know she will. She has limitless potential and we want her to know that. She is truly an amazing person, and we are lucky to be able to coach her.”

And in that moment, everything was OK. Coaches have this incredible power. They can motivate and heal and push in the same breath. They are gifted with selflessness like no other. My heart is grateful for these women who will continue to shape my daughter’s future. May they always know the impact they are having on a life full of bumps, twists, and turns.

Champions of HOPE

Published on July 8, 2014July 8, 2014 by beatingcowdensLeave a comment

It’s no secret that we have been followers of “The Global Genes Project” since our diagnosis in 2011. Meghan fell in love immediately with the denim ribbon, and their slogan, “HOPE it’s in our Genes!” That play on words stuck with her, and the ribbon gave her a good deal of connection at a time when we weren’t sure if we’d ever connect with another soul with “Cowden’s Syndrome.” The connection with the RARE Community at large carried us through those earliest days.

The end of 2011 and well, 2012, and… well, you get the idea… held some tumultuous times for our family.

Adjusting to the diagnosis was not easy. Finding balance within the labels, and the risks, and the screenings, and the surgeries, and the appointments was (and sometimes still is) a struggle. In the months when the diagnosis was at its newest, Meghan’s thyroid was called into question several times. We discovered nodules we never knew were there and learned the early risks of thyroid cancer were real, and ever-present.

She soon underwent the most horrendous of what would be 4 thyroid biopsies over the next 2 years. Scarred physically and emotionally, we began to wonder about this beast we were up against.

In February of 2012 Meghan had her 4th knee surgery for an AVM (arteriovenous malformation) in her right knee. Now convinced it’s stubborness could be credited to Cowden’s Syndrome, the fight to control it’s growth took on a whole new meaning, and we were referred for consultation to Boston Children’s Hospital.

While we balanced the screenings for Meghan, I was sent to my own set of initial screenings. Being 38 and newly diagnosed, I was in the battle full on, and I had had no idea. All the imminent cancer risks associated with Cowden’s Syndrome – except for the thyroid which often comes earlier – seem to peak right around 40. No stranger to doctors, I was trying to figure out how the diagnosis helped explain the roadmap that was my own medical history.

In March of 2012, I underwent what was to be a “prophylactic bilateral mastectomy,” to battle the 85% breast cancer risk I had with the PTEN mutation that caused Cowden’s Syndrome, and my own medical history which had already seen 7 increasingly suspicious breast biopsies. Seven days later, while having my drains removed, my husband and daughter sat in the room as the doctor announce it was a “good thing we moved when we did.” My left breast, the one that had never seen a scalpel, had 1 centimeter of DCIS, close to the nipple and clear of the chest wall. I had breast cancer. They found it by accident. My aggressive, intelligent surgeon, who I met because of my diagnosis, and really BECAUSE of my daughter had saved my life. I needed no treatment.

I left the room that day holding the two people I love more than anything. Unaware of the plans clearly in place for us, I was so filled with gratitude, and so in awe of the reality that if I had never had Meghan, I would have likely never known. And the surgeon’s words, “If we had waited till July like you had wanted, you would have been in a fight for your life,” still ring in my ears. Sometimes you have to stop the “what ifs?” and just say “thank you.”

Ten weeks later I was back in the hospital for a complete hysterectomy. A suspicious uterine polyp, enlarged ovaries, and Cowden’s Syndrome combined again for too great of a risk, and the recommendation was for surgery and quickly.

The shock on my body, the trauma to my family at this point was intense.

I had begun to scour the internet looking for places to go. I found http://www.PTENworld.com and its dynamic young moderator, a Cowden’s patient for many years. I found Facebook, and a beautiful support network there. I found a yahoo group, and a mom there who has consistently gone above and beyond for me, simply out of goodness. Finally, there were real people I could talk to.

One day that Spring I received a Pandora necklace with a pink ribbons on it. After years of advocating for my mother, a bilateral breast cancer survivor, holding the pink ribbons that belonged to me felt strange. Yet, so did the new boobs, smaller, but perkier than the old ones, and all the clothes I was learning no longer would fit quite right. So, I took comfort in that necklace and I wore it a lot.

And one day my very obsevant girl, who was 8 at the time, a few months shy of 9, asked me “What stands for me? The gold ribbon is for childhood cancer, the pink ribbon is for breast cancer, the puzzle piece is for autism. What about me? What about people like me who are dealing with this (Rare disease) every day? I NEED something mom. Not to have a thing, but for my identity.”

Stunned, as usual. I realized I had begun to heal myself, to seek comfort for myself, but I was leaving her behind.

So I happened to be retelling the story at lunch. And my teacher friend, whose husband is a jeweler, and who has a son with autism, really “got it” on so many levels. She told me she’d talk to her husband and see what was around. So I gave her a denim ribbon sticker from the Global Genes Project, and they were on a hunt. Which turned up nothing. There seemed to be no piece of jewelry worldwide to symbolize those with Rare Genetic Disorders. And, with there being over 7,000 RARE dieseases, accounting for almost 10% of the population, to us this was silly.

So my friend’s husband offered to make one. For Meghan. Because if she wanted a piece for her “identity” she should have one. So he did. It took months. And it was perfect. Absolutely perfect. And he was so generous in the donation of his time, all to light up my girl’s world.

Typical Meghan, no less that 5 minutes after she put it on, she started with, “Wouldn’t it be great Mom, if these were available all over the world, and then we could see them when we went places, and we would know the people who have, or love people with RARE diseases?’ And the conversation continued to include asking me to reach out to The Global Genes Project to try and make it a reality.

Well two years have gone by. Felix and I each wear one too. Only 3 ever made. Until recently.

There have been lots of EMails exchanged. Lots of conversations. Lots of people. Ultimately they did decide to have the necklace made, and while the decision thrilled me, I would be lying if I said that I wasn’t disappointed that they couldn’t use our friend, the jeweler. But, business decisions are what they are, and this one was not in my control. And, despite that disappointment, Meghan’s dream, her vision, is becoming reality. We received 2 samples this week, and a “THANK YOU” from the team at Global Genes! The necklaces will be on sale through http://www.globalgenes.org in the fall!

Two years have gone by.

I have developed deeper, closer “long distance” relationships with some “kindred spirits” in the Cowden’s Community – globally!

My girl has some of her own friends with Cowden’s now, spread across the world. She will be 11 soon, and is quite the young lady. She understands life on levels deeper than she should. Most impressively she understands that despite our struggles, there are many in the world who struggle in heart, mind, body, and soul. She knows that “Everyone has SOMETHING!”

This past year she organized an assembly at our school. She worked with Student Council to arrange an evening fund raiser. She partnered with a friend in her own class who has a RARE Disease. We sold T-Shirts. We received intense support from faculty, and parents and students. Every child got a denim ribbon to wear for RARE Disease Day. We sent thousands of dollars to The Global Genes Project.

She has already begun to plan for next year, and wants a much bigger fund raiser. “At a place Mom.” We can really get the word out and raise money. For The Global Genes Project http://globalgenes.org/, and for the newly founded PTEN Hamartoma Tumor Syndrome Foundation http://www.ptenfoundation.org/, another organization close to our hearts.

She has a mind that never stops. She has the heart and voice of an advocate. And this year, she was nominated for the TEEN Advocacy Award at The Global Genes Project. (If you scroll down, the teens are close to the bottom.)

http://globalgenes.org/2014-rare-champions-of-hope-nominees/

Champions of HOPE indeed. So proud of her. So proud to see her name with all the others who have decided to “Do Something.”

“HOPE it’s in our Genes!”

We are BEATINGCOWDENS!

4 Doctors and a Dog Surgery

Published on July 4, 2014 by beatingcowdens2 Comments

Before the school year closed my principal told my daughter to do whatever she had the urge to this summer. Knowing she was a good kid, she understood his meaning. He told her to play hard, and not worry about getting hurt, or hurting.

When I shot him a look, he laughed and ignored me. Speaking right to Meghan, (referring to an event at school last June where she climbed a rock wall and ultimately needed hand surgery) he asked her if she would climb the rock wall again. She said, “Definitely!”

He smiled at her, knowing he had left his mark in the just over a year she spent at our school. Her confidence was up, and she knew the satisfaction of completing a task, and sometimes even winning – far outweighed the physical consequences that simply seem an inevitable consequence of being her.

And yes they are all about the same age, mine's just REALLY tall! — And yes they are all about the same age, mine’s just REALLY tall!

Turns out that very conversation was replaying in her mind as she was first to cross the finish line in the “Fun Run” this morning, held annually in memory of my cousin Meghan, her namesake. The pleasure in her eyes outweighed all other things as she held it together long enough to get in the front door before she asked for ice.

Reminding me today as educators we shape lives in ways deeper than the classroom. I am grateful…

Meghan needed this morning. As a matter of fact we needed it – so badly that I think even the rain knew. And maybe my Dad, my cousin’s “Uncle Tom,” was able to push those clouds out-of-the-way for a while. His angel wings are 7 months strong today. I think we got a special favor.

It’s hard to believe we’ve only been out of school for a week. My head is spinning.

Monday was the rheumatologist, full of confusion, still perplexed by pain without swelling that plagues so much of her body. We spent hours, and arrived home minus a copay and with little to show for the trip.

Tuesday morning as we prepped for the GI, fortunately a local appointment, I got a call from the vet. “I know Allie is scheduled to have her teeth cleaned tomorrow, but we have a cancellation. Can you bring her today?” All about getting things done, I got the dog in the car and dropped her off for a dental cleaning.

Of course, I left in tears because as tough as I want to say I am about the dogs… I am who I am.

So when they called me a bit later to tell me she would need 5 extractions, my heart almost stopped. But, there was little choice so I consented.

We headed to the GI and had a pleasant visit there. It’s always easy when things are going well, and generally the stomach is so much better since that stint in the hospital in May that we are clearly headed in the right direction. We left with an appointment in 6 weeks, and told we could slowly, and carefully start reintroducing some of the foods stripped from her already restricted diet after the diagnosis of severe gastritis.

I picked the dog up a bit later that night. And her pain medication, and her antibiotics, and as I was leaving even full of relief to see her, it was hard to tell what was whimpering louder, Allie, or my Visa.

Wednesday another local visit, this time to the orthodontist. And instead of getting the news that the braces are ready to come off, she left with more rubberbands. The initial projection of having them removed in February seemingly a distant memory, and more conversation about her teeth and how “unpredictable” they are. Why not? So to make sure that they don’t move too far in the wrong direction – we get to go back in 2 weeks, then in 4. We’ve got time I guess.

Thursday, after feeling confident that the dog was on the mend, we left for the endocrinologist in NYC. A somewhat productive conversation at least led to a mutual agreement that the synthetic medicine may not be working for her. Her fatigue, I was told, “may not” be associated with her insanely elevated blood levels. We’ll get the labs on Monday. Two more 6 weeks cycles for the levels to regulate. Then we try something new. 12 weeks is a long time to look at continuing to feel less than your best, but at least we left with a more open-minded doctor than when we started.

“This is getting old.”

I’ve heard that phrase a few times from my normally happy, easy-going kid. At 10 years and 11 months she knows chronic pain, needles, surgery and waiting better than anyone should. When she asks about my childhood, and I tell her that I also went to quite a few doctors, (although not as many as she does,) she tells me I am “lucky I didn’t know I had Cowden’s Syndrome.”

And as I am left to ponder what it must be like knowing more about genetics and your broken PTEN gene than you might ever want to, I think about how hard it must be. The thoughts that go through her head, the level of her vocabulary, her insight. So much to absorb, so much maintenance. She gets that she’s lucky in some ways, but overtaxed in others… it is so easy to forget that she’s not even 11.

That is why mornings like this one have to happen. That is why she has to sometimes taste a little bit of victory, when she feels like the challenges might swallow her up. That’s why she has to run as if she has no pain. That’s when she gets to be a kid.

This was the worst of it – this week, for doctors. This was my worst scheduling job by far. On the 14th she has one and I have one. Then on the 15th I have 4. (Genius!) And after that things lighten up considerably.

This week I settled some paperwork that has been lingering. I fought over medication with the pharmacy. I began the process of organizing a few very chaotic things.

Today we got to see some family. Meghan got to hug three great grandparents, two of which are in their mid 90s! We got to chat and to eat and take a break.

Tonight we will sit with a sweatshirt and watch the sky for fireworks.

Tonight I will thank the angel who moved the clouds away this morning.

Come on summer – we are READY!