The Productive Struggle

Published on May 12, 2014 by beatingcowdens3 Comments

Tomorrow I was scheduled to attend a professional development workshop entitled “The Productive Struggle.” I was kind of excited to go, as it sounded like quality PD right up my alley. “The Productive Struggle” is supposed to focus on helping students find their way through the rigorous problems and questions of the Common Core Learning Standards (CCLS.) And regardless of your opinion on standardized testing, when you break down the basic principles of these standards to their center, there is much value, and much to learn.

As a math teacher I like to focus on having students “Persevere to solve problems.”

This is in no way as easy as it sounds. Children are programmed to wait. They want the “right” answer. They fear trying and making mistakes, and learning, and trying again.

As a teacher it is my job to give them the skills they need to solve problems. I need to make sure their knowledge of math is broad. I need to tap off the skills their classroom teachers have taught. I need to set firm boundaries and standards for not giving up. Then I need to step back and let it happen.

Some days it is like a well rehearsed symphony. And other days it sounds a bit like an early childhood music class. But I try, and try again, and we make progress. Because giving up is not an option.

I have had some time to think, being cooped up here in the hospital this last week. And tonight it is easy to understand while I am glad to be by my daughter’s side, I am sad to miss any lesson in the “productive struggle.”

In many ways it is what is missing in our lives as patients with Rare Diseases.

Follow my logic, using my Meghan as an example.

So Thursday she woke up vomiting bile, and in tons of pain.

Virus? Nope.

Flu? Nope.

Terrible reflux, awful stomach cramps.

Appendix? Nope.

Fever, back pain.

Kidneys? Nope.

And so it continued, and still continues. We have met many nice, well intention-ed doctors and residents. And we have met a few that should really use their intelligence to become researchers and stay far away from people.

But 5 days later my daughter still sits with stomach pain, difficulty eating, and some pretty significant GI issues.

We have had ultrasound, CT scan, and countless lab tests. Tomorrow she will have endoscopy at 2 PM.

Some of the medication changes have been beneficial. And we may see a slight decrease in the severity of her pain tonight.

But, what is the root of the problem?

She didn’t develop GI issues so severe they require a lengthy hospital stay without there being any connection to the rest of her body.

I have a 4 inch thick binder with medical history. It reads as a chronology of 11 surgeries, several hospitalizations, outpatient procedures and more. There is lab work, sonograms, MRI reports. I actively cataloged the whole thing by date. And I brought it. And I offered it to the doctors.

And then I took it home. No one even laughed at the cartoon on the cover. I’m not sure it was ever opened.

See the problem we have, Meghan and I, and so many others, transcends Cowden’s Syndrome.

The problem is that most practicing doctors have never encountered, experienced, or worked through the “Productive Struggle.” So when a tough case hits them – they only do what they would normally do. And when all those tests are fruitless, instead of thinking outside the box – they assume OUR box is broken.

Meghan and I went through the chronology of the last year together last night. We spoke about the AVM on her hand. We continued through the MRIs that exposed her to extreme amounts of gadolinium. We talked about the two rounds of heavy metal chelation, and how even though she excreted significant heavy metal, the rebound effect triggered crippling migraine headaches. We recalled the neurologist, and the instant diagnosis of migraine without much history, touting them as “very common.” We remembered another MRI to make sure the brain was clear. We talked about the medicine for the migraines and whether it really worked, and how it kept getting raised every time she had another headache. Raised, not changed. We talked about the tickle in her throat that started in November, and the neurologist’s flippant remark that it might “just be a tic.” We talked about the neurologist telling us to increase the Celebrex to stop her last migraine – which it did, but it was never his drug to change to begin with and he never consulted the prescribing doctor. We talked about the thyroid nodule, and the subsequent biopsy and thyroidectomy. We talked about the surgery and the hospitalization that followed with GI issues in February. We spoke about the throat clearing “tic?” that we had hoped would resolve after the thyroidectomy. Then we spoke about thyroid hormones, and what having a body in a hypothyroid state for months can do. We spoke about the ENT and his determination that there was inflammation in the nose. We discussed his nasal spray and admonition to double the reflux medicine.

And then, after ten minutes of talking out the medical highlights of the last 10 months we realized NO ONE had asked about any of that.

It was like she is here being treated for a totally separate problem as a kid who “happens to have” Cowden’s Syndrome.

So they order their tests. One at a time. And they watch and wait. And we go for ultrasound and CT scan. And we change-up some medications.

But no one asks what the effects will be of her stopping Celebrex. No one asks why her body required such a dose, even as I start to see the initial effects of the NSAIDs being totally our of her system.

They come in and tap her belly. It still hurts in the same spots. But that’s not what they want. They did what they know. Now they want it to be better.

I have to be here with Meghan tomorrow, but there are a few of them that could stand to attend the PD on the “Productive Struggle.”

Goodness, work for it people. It’s not always easy.

But she’s young. And she’s bright. And she’s frightened. And she’s worth it.

Passing time….

Published on May 9, 2014 by beatingcowdens6 Comments

So here we sit. Again. For the second time post thyroidectomy, we are in the hospital. The girl doesn’t feel well. She just doesn’t. End of story. But, not too many people seem ready to listen until she’s in a full on physical crisis. Even then sometimes the numbers are frighteningly low. Yesterday she knew. She NEVER tells me to stay home from work. She KNEW. And my pediatrician heard it in my voice. She was admitted soon after he saw her. He wanted it to be the flu. In some ways I did too. A little Tamiflu and some rest. Buts she’s negative for flu. No real surprise. Too simple a diagnosis for my girl. Since her surgery in February, her TSH (Thyroid Stimulating Hormone) which is supposed to rest somewhere between 4. and 4.0 has been lingering well over 10, despite numerous medication adjustments. The TSH is supposed to be down regulated when the synthetic thyroid hormone takes the place of the T4 and T3. Enough thyroid hormone and the TSH decreases. Not enough and it increases causing hypo (under active) thyroid symptoms which can range from bone crushing fatigue, to generally feeling unwell and a whole host of issues in between. He medication has been adjusted upward with no effect – several times. I know it takes time. I barely remember my own battle with thyroid hormones over 20 years ago. The veterans of this surgery tell me 6 months, a year… I get it. I do. But then there is the reality of watching your kid feel crappy every day. The reality of watching her FIGHT with all her might to do the normal things others take so easily for granted. And then I get impatient. To complicate things it may not just be the thyroid hormones keeping us hopping. That “lymph node” turned “salivary gland” is now back to a lymph node in the neck. We are awaiting the ultrasound that I feel should have been done with her appointment last Monday. And there is a fever. She never gets fever. Not really. And yesterday it was 102. Today around 100. No answer why. Not even the White Blood Cell Count gave a clear indicator. And the reflux. Painful. Like fire. Lack of desire to eat much of anything leads to weakness. And the throat clearing. Reflux? or lymph node? or something totally different? So we temporarily stopped the celebrex to try to solve the GI issues. The medical equivalent of robbing Peter to pay Paul. The joint pain – managed for now – is rearing its head. And why does a 10-year-old, with no gall bladder and a week of the worst reflux of her life – with no dietary changes – begin vomiting bile? Maybe just maybe we will meet up with a decent GI. Girls can hope. So I sit. We sit. Waiting for answers to questions. Waiting for answers to more questions than we will ever get. But we are hopeful. Anxious. At least right this minute the worst part of being here is passing the time with the stupid IV.

State of Mind

Published on May 4, 2014May 4, 2014 by beatingcowdens6 Comments

Fortunately her shoulder injury has healed quite nicely.

She heals well. Good thing. She has had so much practice.

She progressed through the state math exam with extended time for writing.

She weaned herself off the muscle relaxants quickly.

She is tough.

Good thing.

Wednesday she pulled me aside in school and asked me to feel her neck.

“Mom, I think this is a lymph node”

As she gestured to her neck, not far above where the mass that had cause the suspicion that prompted the removal of her thyroid, had sat less than 3 months earlier.

Hesitantly I put my hand to her neck, not as much to check, but simply to verify.

I knew she was right. She is always right. I swear she’s like “The Princess and the Pea” sometimes. She can feel everything.

But I put my hand to her neck as she instructed and instantly knew there was in fact, one swollen lymph node easily felt.

“Mom, the surgeon said I only have to go back and see him if I have any swollen lymph nodes. But, he said that was “highly unlikely.” I guess he didn’t know who he was dealing with!”

She tried to make a joke, lighten the mood while reading me for a reaction. I giggled. I reassured. I felt a deep sinking flutter in my belly.

Not because I assumed it to be a problem, but more because I knew this would unleash a cascade of additional appointments, and really… well, quite frankly… we are NOT in the mood.

Of course, all of that was, and is irrelevant. I called the surgeon, whose office insisted I have a local clinician verify that it was in fact a lymph node.

I called first the ENT who has been dealing with the throat clearing issue, hoping to kill two birds with one stone so to speak. HA! His office released a new flock – of which we will have to contain what we can another day. Instead of inviting us in to check on her improvement on his medication, he determined, sight unseen – and relayed through a secretary, that Meghan should see a GI doctor.

Apparently his on the phone conclusion based on the fact that her symptoms had not fully resolved on the nose spray and increased reflux medication was that a GI needs to treat her for reflux. While that may be true, on some level, at some point, someone at some point has to realize the two of us are quickly becoming overwhelmed, and sending us to another doctor is not always a good idea. (Plus, when your kid is 5 foot 2, and 100 pounds at 10 – no GI takes you very seriously at all.) And in reality – I just needed someone to check the neck!

So, I waited for our trusty pediatrician, and Thursday afternoon – on a bright sunny spring day – after an hour and a half wait – we heard what we already knew. It in fact is a lymph node, and it should be looked at.

So as Meghan asked me in the car if she should be concerned, and I calmly let her feel my own set of chronically inflamed lymph nodes, I calculated our next steps.

When I called the surgeon’s office this time I was told we would be seen Monday. They called Friday to let me know that our appointment was to be 9:30 on the 5th.

I woke up Thursday morning with a most unusual swelling in my left eye. I can’t for the life of me figure out the cause. By Friday when I went to tell my (patience of a saint) boss that I would need Monday off, I was looking far less than my best. Puffy eye had turned red and was starting to resemble infection.

As I sat in the urgi care waiting room Friday evening ready to collect my prednisone, my antibiotic, and my stern warning that if things didn’t improve by Monday I needed to see an ophthalmologist, I wondered where the breaking point is.

We had some tough nights this week – the two of us. We had some nights feeling a lot like we were bearing the burden of Sisyphus.

It is an uncanny feeling to be at the bottom of the mountain without a prospect of getting to the top. This feeling that we WILL be at this forever, requires careful mind games to overcome and is not for the faint of heart. We both experience it very differently, so the trick becomes to rely on each other, but understand our vantage points are unique. We MUST rest on each other, but others as well. And we MUST teach each other to look for the sun and the flowers and the beauty around us right where we are. It is a tall order for me some days. My 10 year old, well, she is my hero. Because, despite the occasional setback she finds a way to pick up and keep on keeping on.

She sent me this in my Email this weekend. I read it a bunch of times. Then I hugged her. She is determined. She is driven. She is my reason for staying focused.

So I shared with her a poem on my mind…

If you think you are beaten, you are
If you think you dare not, you don’t,
If you like to win, but you think you can’t
It is almost certain you won’t.

If you think you’ll lose, you’re lost
For out of the world we find,
Success begins with a fellow’s will
It’s all in the state of mind.

If you think you are outclassed, you are
You’ve got to think high to rise,
You’ve got to be sure of yourself before
You can ever win a prize.

Life’s battles don’t always go
To the stronger or faster man,
But soon or late the man who wins
Is the man WHO THINKS HE CAN!

– Walter Wintle

Today, she had a swim meet. Her team lost. They usually do. But they are great kids, who have a BLAST, and cheer for each other. They generally have a great time. And somewhere in between the team being hammered, she was on two second place relay teams, and pulled this out.

Gray Cap – Lane 4 (After her goggles flipped at the start!)

Clearly the highlight of my week.

Now let’s hope tomorrow is much ado about nothing, and we can get about facing the next set of plans life has for us.

In the meantime – your prayers as always, are gratefully accepted.

Playing in Pain

Published on April 27, 2014April 27, 2014 by beatingcowdens3 Comments

We missed church again today. Not because we overslept. Nope. We were up with plenty of time to arrive at the Urgi Center and take our typical seats, waiting in a crowded room. If I had my copays back each year, I think they would exceed my tax return. Which is no great shakes anyway, especially with the whole identity theft mess. But, I digress…

Yesterday was a CYO swim meet. It started poorly because the bungee on her prescription goggles snapped in my hand. And they don’t get to warm up before a CYO meet, so there was no way to check and see if the new cord set the goggles right. So, she want back to her old goggles. Guaranteed functionality – sacrificing vision.

She swam. Hard and as fast as she could. She maintained her time during her first 25 fly in the relay, and took 2nd in the individual fly. She even swam up – with the 7th and 8th graders for a 50 back, and took 2nd there too. But it was during the last leg of the 200 free relay – the last lap of her 50 – her father and I looked at each other and knew – the right arm was hurt.

When I met her in the locker room her resolve was strong. My mission was clearly to help her get out as fast as she could. But the arm made it tough to change quickly. We got into the car before it all came out. She explained how the loss of the prescription goggles altered her judgement and she banged her arm into the diving board rails as she started – out of a lane she has never been in before.

We came home and iced the arm. We watched as the pain seemed to get worse. It went from the arm, up into the shoulder and into the neck. We are so used to there being pain. This child lives in constant pain. Some people must think all sorts of things, because something truly always hurts. But we have learned to put them aside, and, we have to triage. Last week she walked around for 5 days with a sprained ankle. Pain is so personal. Her nerve endings seem so easily excitable. Any injury seems to trigger an attack of “hyper healing” effort by her body. Even with 200 mg of MAINTENANCE Celebrex a day, she contends with joint pain and muscle spasms.

But she is an athlete, trapped in a body that is not quite sure how to handle her. So she presses on, and in between wanting to stick her in a bubble, I am awed by her raw determination. She wants to RUN, and KICK, and PLAY, and SWIM, and be a KID.

It’s not uncommon for her to spend the day after phys ed. recovering. Or a day or two after an athletic play date trying to work through the residual pain. I know that the other kids aren’t fighting their bodies like this, and it breaks my heart. But she is one determined young lady.

So last night we sent a text to our PT. To know Dr. Jill is to love her, as she is one of a select group of medical professionals who truly works for LOVE of the children she services. And when you are Meghan you have “PT for LIFE” and she’s been a patient there for about 4 years! And at 9PM last night we were in her living room – getting informal advice from a very skilled friend. If you’ve followed our story a while you know Dr. Jill is the impetus behind our Cowden’s diagnosis. She is the one who said, “something isn’t right here – too many unconnected pieces. Take her to genetics.” And I did. And the rest is our unfolding story.

Dr. Jill encouraged us to get a muscle relaxant for Meghan at Urgi Care today.

She's an absolute DREAM child - but really God knew what He was doing giving us ONE! — She’s an absolute DREAM child – but really God knew what He was doing giving us ONE!

So we did. We also got a note because the injury is to her right bicep and shoulder. Her dominant side. And there is no practice for her tomorrow. And no Phys. Ed. on Friday… and then there is the math test this week. And the gamble as to whether she will be able to write enough, fast enough… So much to think about.

The muscle relaxant calmed the shooting neck pain for a while, but its on its way back as I type.

We spent some time today talking about our fundraising hopes for Rare Disease Day 2015. We talked about my promising conversation with the head of the PTEN foundation – formed in December 2013. We talked about wanting to do something BIG for the PTEN foundation http://www.ptenfoundation.org/ and Global Genes Project. http://globalgenes.org/

I sometimes complain about being too busy, but she, like me, needs a positive project – even a simple play date – just something on the horizon to keep her focused.

She managed to type out the homework. We are getting ready for tomorrow and another crazy week.

We are babysitting my sister-in-law’s 12-year-old rottweiler. A 3 dog house. Cause a little more chaos creates more reason to keep on keeping on.

And I marvel that aside from some waning eyesight which I will have to address eventually – my body is stronger, and more able to endure stress than ever before. And I remember that it’s a good thing I stumbled upon nutritional cleansing when I did. The closet is full of the smallest clothes I have ever owned, and the ability to endure is not to be taken lightly.

So tonight we will get a real sense of how long the muscle relaxant helps. And tomorrow we will conquer the hurdles of having the dominant shoulder banged up during a school day.

I think I’ll get everything prepared nice and early. Just in case…

Losing the Battle – to Win the War!

Published on March 30, 2014March 30, 2014 by beatingcowdens2 Comments

Friday’s thrilling adventure at Borough Hall ended as so many days do. So excited to tell her story, so amazed by her experience I thought she’d be on the phone all night.

But as we walked up the street to the parking lot she whimpered. “My knee. The old pain. How could it still hurt with the Celebrex?”

Good question, I mused, as I tossed her a cursory answer about the weather, and people’s joint’s aching.

I left out the part about how MOST of those achy people are at LEAST 40 – not 10. But she knows that already. Can’t put much by her.

We headed home, but as things often do here the downward spiral had begun, and it was a quick one.

I soaked her sore knee in an epsom salt bath for some relief, but the migraine that she had been battling all through school was starting to win.

By about 7:20 she told me she was going to bed. Never a good sign.

No fever. No signs of “illness,” but we are frustratingly used to this. There is nothing tangible that any doctor can seem to figure out as to where all this pain comes from. Yet it does. All over. It’s real. It’s torturous to watch, and it frustrates the free-spirited agile athlete trapped in this painful body.

She woke around 9:30 this morning. I was already at the bank. The text simply said “headache.” My husband is a man of few words.

When I got home at 11 to take her to her 12:00 appointment she was in a dark bedroom moaning in pain while Felix rubbed her head.

We tried some saline, some food, her morning pills. No success. No appointment.

I ran to the party we planned to attend as a family, to wish one of our favorite 5 year-olds a Happy Birthday.

I woke her at 2:30 like she asked. The CYO meet was at 4. The highlight of her week.

We tried a warm shower. More saline.

“I just can’t do it,” she half whispered, half screamed. “WHAT IS THE MATTER WITH ME?”

My stomach sank. That was the proof positive that things were not improving. She looks forward to every one of those meets.

After reassuring her that it’s nothing she’s done, or does… she told me to text her coach and tell him she was really sorry.

And she was.

Another fun event missed. Another pleasure lost.

My 10-year-old amazes, impresses and consoles me, as she says, “Cowden’s may have won the battle today – but it won’t win the war.”

She spent the better part of the day in her bed – willing away the body pain and the headache.

She doesn’t want to feel like this. And I have to tell you – she handles it pretty damned gracefully.

No one she met yesterday would have believed this was the same kid. From a full on powerhouse of a conversation with a respected elected official, to barely being able to lift her head.

That’s how we roll here.

That’s where her sense of urgency comes from. She NEEDS people to know the real deal. Whether they want to or not.

It’s 2:30 AM Sunday. They have been resting for hours. I had to sort out the banking mess and the subsequent paperwork it generated this week. I needed a new list.

See my mind is so often preoccupied that I forget… a lot.

Because deep in my nagging Mommy gut, I feel like there is more. We are missing something. And I hope its minor. Or that I am wrong.

No one can explain all this pain. And lots of people have had the chance to try.

People wonder how I stay so organized, or why. I think it’s because I spend a lot of time waiting for the other shoe to drop.

I’m over making plans. I get it. We can try to commit to things in advance, but our acceptances will always be tentative. We have to make our decisions in the moment.

The win/loss column waffles sometimes, but we will by the grace of God, the power of prayer, and our love for each other, come out on top. Failure is not an option.

We are BEATINGCOWDENS. We will!

“A Friend in Borough Hall”

Published on March 28, 2014 by beatingcowdens7 Comments

Meghan received a special invitation a few weeks back. She kept quiet about it – even though she was bursting at the seems.

On February 27th, as we were preparing for Rare Disease Day, Meghan met and shared her story with Borough President James Oddo. They hit it off instantly, and spoke like old friends for quite some time before he broke away to introduce the “Readers are Leaders” Campaign to our school.

More about their meeting here:

https://beatingcowdens.com/2014/02/27/rare-disease-day-2014-through-meghans-eyes/

Well after their extended conversation, the Borough President gave Meghan his Email address and reminded her she had a “friend in Borough Hall.”

They exchanged Emails at least once, and Meghan was THRILLED to receive an invitation to sit with the Borough President AT Borough Hall – 4PM, March 28th.

And the make the whole thing even more exciting, her efforts on advocacy and awareness and fundraising earned her the nomination for NY1 “Staten Islander of the Week.” (More on that segment which will air next Friday to follow.)

We arrived early, a rarity for us, but this was a REALLY big deal. Meghan had carefully selected a few gifts for the Borough President which were tucked in my bag. She proudly donned her “previvor” tee, and we sat anxiously in the comfortable waiting room.

This kid is clearly a "FORCE" to be reckoned with! — This kid is clearly a “FORCE” to be reckoned with!

We were given a tour of the basement and first floors, and showered with some gifts by “AJ.” A giant help, and a generally nice guy.

Meghan and "AJ" our helpful tour guide! — Meghan and “AJ” our helpful tour guide!

Then, it was time.

Meghan and I were greeted with hugs by our warm and extremely genuine Borough President. He repeatedly introduced Meghan as his friend. He told stories of how she inspires him. His staff and constituents walked in and out, joined the conversation, and came and went, as if a 10 year old in the office was a normal occurrence. They talked about health and advocacy, about her denim ribbon necklace, and her Cowden’s Syndrome Awareness card. They talked about her surgeries and her medical struggles, but also about reading, and literature, and the healing power of dogs. They have quite a lot in common and my heart sang to watch my 10 year old in the arm chair hold her own with a well-respected politician as if they had been friends for years.

The NY1 interview was comfortable. She speaks clearly, and flashes an award winning smile.

Meghan gave Borough President a rock with the word “courage” in it, after he shared a touching story with her.

He reminded her if she needs anything, she is to contact him directly. And as the year goes on as she thinks of new ways to spread the word about Rare Diseases, he will help in any way he can.

Her eyes brightened. Her goals got larger.

“You can be angry, or you can DO something, So I decided to DO something,” she told the reporter.

And she did.

And she will.

Watch out world.

Thank you Borough President Oddo. Staten Island is in good hands. You are one of the good guys.

Today

Published on March 19, 2014 by beatingcowdens1 Comment

In the spirit of one day at a time… today she feels well.

Today homework is already done.

Today her stress level is low.

Today she swims in the water like the fish she longs to be.

Today as I sit poolside with my computer, I can watch her laugh and smile with her teammates.

Today the less rigorous of the two practices, her CYO team comes first – but she is sure she can manage a double practice.

Of course about 7 days ago we raised the Celebrex back to its (in my opinion) too high dose.

No one can figure out why the drug works for her, but it does. And I am grateful, but scared all at the same time. The list of medicine grows. The knowledge of Cowden’s Syndrome remains spotty at best.

We know of the cancer risks, but the chronic pain, the low endurance, the vascular issues, the migraines….

One of our doctors theorizes that the Celebrex has kept her AVM in her knee from acting up. Given the potential side effects of Celebrex I think it’s the medical equivalent of robbing Peter to pay Paul.

Sometimes I feel like with all the doctors we see, there is still no one minding the store. We travel between specialists, between symptoms, between surgery and recovery.

The blood for the thyroid won’t be drawn for a month. She slept 14 hours Friday night and another 12 Saturday night. No major plans for us for a while.

The throat clearing never stopped with the thyroid removal, and I am flat our unsure who to even ask.

Sometimes I like to play mind games, and forget about Cowden’s all together. I daydream a bit…

And then I remind myself that every illness, every experience, every event that occurs in our lives helps to define us and make us who we are supposed to be. Like that ‘ever changing puzzle” my Dad used to tell me about.

And I think of my friends and family. They are contending with diagnoses new and old. None of them fun. I would never say to them that experience shapes who we are. That is a personal belief that the wrong person just might deck me for.

Especially on my heart is my internet friend from Australia. Never have I felt so helpless as her daughter endures multiple brain surgeries and I am 12 hours and several continents away.

Today. Today my girl feels good.

Today I will do as I have been taught and let tomorrow worry about itself.

Today we are BEATINGCOWDENS!

Rare Disease Day 2014 – Through Meghan’s Eyes

Published on February 27, 2014 by beatingcowdens11 Comments

Yesterday, our local paper published an article about Meghan and Rare Disease Day.

http://www.silive.com/news/index.ssf/2014/02/post_738.html

Today, the Borough President came to our school about a 4th Grade reading program, and was so interested in Meghan’s story he took the time to talk to her. She was so thrilled by his genuine nature, and his true interest in her. Not too shabby of a smile for a kid just 2 weeks post op from a complete thyroidectomy!

Meghan chatting with Borough President Oddo!

Today, Meghan addressed the school about what it was like to live with a Rare Disease. She spoke eloquently and passionately. The students were phenomenal. She was exceptionally BRAVE.

This is her speech.

Living with Cowden’s Syndrome

Every day I have pain. Cowden’s is a Rare Disease that never gives you a break and always keeps you on your toes. Cowden’s is a blessing and a curse. I am grateful to Cowden’s, for it has made me who I am today. Cowden’s is also a curse, to have to go through what I do. I DON’T want others to have to do what I do. NO ONE should have to endure the countless doctor’s appointments, tests, hospitalizations, and surgeries that a person with Cowden’s Syndrome has to endure.

Today is February 28th. To many people today is just Friday, but to others, February 28th is Rare Disease Day. Rare Disease Day is to raise awareness about Rare Diseases world wide. Rare Diseases are an issue. 50 percent of Rare Diseases affect children. 300 million of the earth’s population has a Rare Disease. There are over 7,000 Rare Diseases and less than 400 treatments with, currently NO CURES! With Rare Diseases you need all different types of treatments. Treatments and surgeries can be helpful, but they don’t fix the problem permanently. Rare Diseases aren’t contagious. If someone in your family, or a friend of yours, has a Rare Disease, that doesn’t mean that you will have one.

We chose the movie BRAVE for tonight’s movie night on purpose. When you have a Rare Disease you have to be brave. Individuality is very important. No matter who you are, EMBRACE it and be BRAVE. Be an individual. Being BRAVE is about not being scared to be you. Don’t just follow other people. BE a leader, be BRAVE! You are who you are so why not recognize that and make the best of it? Explore and be BRAVE.

Until September of 2011 I did not know I had this Rare Disease, or ANY Rare Disease. All I knew was that my body was far from NORMAL. All I could do was be BRAVE. Every single second of every single day all I CAN do is be BRAVE. You never know what is lurking around the corner. All you can do is prepare yourself and stand up tall against all odds. All you can do is be BRAVE.

Once I learned that I had Cowden’s Syndrome I researched it. It means that my PTEN gene is broken. Your body is made up of all sorts of G-E-N-E-S not J-E-A-N-S like the ones you wear. PTEN is the gene in your body that keeps your body from growing tumors. With a broken PTEN gene, I learned that my body was more likely than other people’s to grow tumors, and that sometimes those tumors could be cancer. Imagine how scared I was, and how I needed to be BRAVE. Cowden’s Syndrome has different versions of the same symptoms on each person. 1 in 200,000 people have Cowden’s Syndrome. Another thing I thought was interesting was that 80 percent of rare diseases are from genetic origin.

I’ve always wanted something to represent me. I knew there was the gold ribbon for Childhood Cancer, the pink ribbon for Breast Cancer, so on and so on. I NEEDED something to represent me. That is why I have this first of a kind denim ribbon necklace. It is the first of its mold and has a ONE OF A KIND inscription on the back. My mom and dad have one too. The support I get from my family is incredibly inspiring. I REALLY want to make more people aware, as you can see.

All you can do with Rare Diseases can do is be BRAVE. Look danger, sadness, disappointments, and diagnoses in the face. Be prepared. Don’t let it break you. For each and every Rare Disease, stand up to the challenges it brings, and don’t let them break you. Let it make you stronger.

When I’m here at school I put on a mask. A mask of happiness, of making people think that I can brush everything away. No one knows that under that mask is a girl with the weight of the world on her shoulders. All I can do is be BRAVE. I cannot do what everyone else can. I struggle to fit in and find acceptance in the world. All I can rely on to make me smile and laugh are my friends. They are part of the reason that I can keep up the mask. I will never let anyone know what I think. That is who I am and what I do. NEVER judge someone by what they look on the outside. I am a perfect example of this.

Be KIND, be AWARE, Rare Diseases are EVERYWHERE!

And then – as if I wasn’t proud enough…. she put this video together all by herself….

Such a proud Mom! Spreading the word…. LOVE this kid.

Can’t wait until tomorrow for MOVIE NIGHT!

And the body says… SLOW DOWN!

Published on February 23, 2014 by beatingcowdens5 Comments

So it’s almost 2 AM on Sunday. And I have to say, I didn’t see this one coming.

This is the part where I remind people over and over that just because you CAN live without a body part, doesn’t mean your body doesn’t miss it when its gone. I mean we were made in one piece…

So the recovery was going pretty well, but that’s mostly due to her feisty determination.

But there is a point where you look back over the last 9 days and consider a few major things. That point came at about 4, and 5 , and 6 this afternoon as she was violently and quickly vomiting herself into dehydration.

If you consider that there was the stress and worry of HOW we were going to get to the surgery, then the brief pleasant stay at Ronald McDonald House, followed by a 4 hour surgical delay, coupled with a less than smooth hospital stay that had its share of communication issues… you start to get a sense of the stress that has been this February “vacation.”

Sorry we didn't send a post card, but it was a blast ... — Sorry we didn’t send a post card, but it was a blast …

Really it extends way farther back than that… but rather than bore you again with all the back story I’ll stay current.

So on the 13th the thyroid came out. It was a three hour procedure with lots of general anesthesia junk for my pretty organic girl. Then there was the whole removing an actual PART of her body. And then there was the introduction of the synthetic replacement hormone. And there was lots of fidgeting with calcium levels. And there were narcotic pain meds for a few days too to keep the edge off.

And at some point around 4 today her body had had enough.

I love when Meghan vomits and people say, “Is she sick?” And I say “nope.” Rarely, (knock on wood – NOW please) does Meghan get a “stomach virus,” but she’s not a stranger to vomiting. She vomits when her body has had enough.

And today, her stomach hurt. Her knees hurt. Her hips hurt. Today I couldn’t keep the pedialyte in cause it all happened so fast. And, since there’s a first time for everything – we actually had to go to the ER for fluids. Except she’s Meghan. And she’s only a bit over a week post op. And they just wanted to be careful… so she’s asleep in the bed. I am typing away as I won’t even attempt to sleep until after the 3 AM meds.

And after the ER was over and we came up to the floor for a bed – in a place we have spent some time before- we passed by the NICU where she started her life in 2003. While I was reflecting I looked at our nurse and thought she looked a little familiar. Once she told me her name I was incredibly grateful I had been kind to her son when he was in my 5th grade class some (AHEM 13 – or more) years ago. You never know when you’ll need Karma on your side…

And now this poor, lovely nurse was left to contend with my daughter, reading package inserts and discussing medications before they were given. Meghan talks a lot. But I didn’t feel guilty about that part (GRIN.)

So the fluids kicked in and she began to perk up. She had time to share with the doctors and the nurse her denim ribbons, her Cowden’s card, AND her movie for RARE Disease Day. They want us to bring them some ribbons for the floor.

Me, I got my nutrients in my – thank goodness I always stuff a meal bar and an EShot into my bag… ALWAYS. That knocked that pounding headache right out.

She bounces back. Quickly. But sometimes a little too well. I have to watch her. Determination can’t do it all. The body has to help too. And as strong and tough as she is, we all need to be reminded that, well she has this RARE Genetic Disorder called PTEN Hamartoma Tumor Syndrome… or Cowden’s Syndrome… and well, even though we may not always want to admit it – that darned syndrome can make life a little extra tricky.

Thyroid PREvivor!

Published on February 21, 2014 by beatingcowdens8 Comments

The phone rang at about 7 PM. It’s Friday night. I did not expect the call to be from the nurse practitioner at the endocrinology office that manages Meghan’s care.

Wednesday we went in for a surgical follow up appointment. The incision is healing nicely. She is still sore but cleared to return to school Monday… and swimming too. While were there, they asked for some lab tests to be rerun.

Calcium levels which were botched Friday before discharge needed to be looked at again. And the parathyroid hormone to make sure it was still functional.

Before we left the facility, we received word that the calcium levels were actually high. No need for me to even start ranting again.

We were advised to keep her on the current supplementation level for 4 weeks, then wean her off and revisit the surgeon in 8 weeks. We would also see the endocrinologist at that time. Although, endocrinology would be ordering lots of labs in the mean time. All of this I understand.

Except, when the nurse told me she was calling, at 7 on Friday night (when the results from Weds. labs were in the system on Weds) to tell me to keep Meghan on her baseline calcium (the Isagneix Calcium she has taken for almost a year) and lower the supplemental pills they gave from three to two.

Seems logical. EXCEPT when we were discharged in that debacle Friday night they altered the script from 3 to 2 already. So so we go down to one?

The nurse stuttered, confused. I still don’t think anyone understands what a mess they made out of her care on Friday. No, she said. We will rerun the calcium in a week. Anyone want to wager that it will be too high?

As she went to hang up I asked about the pathology I had been waiting on pins and needles for. Almost as an afterthought, she said she didn’t think it was in. Then, “Oh, it’s right here… want me to send it to you?”

Um, YES.

“Everything seems ok, do you have a fax?”

YES!

And that was the end of the conversation. Left to read the pathology report on my own I pored over it as best I could. Confused that it was date stamped 6PM on Weds…. and I found out it was in by accident. But, whatever…

So without the aid of a doctor, and with my somewhat well developed medical vocabulary, everything looks to be

BENIGN!!!!

There are things about it I don’t like, of course. Like that some of the “lumps” are referred to as nodules, while the three problematic ones are called “tumors.” The largest of these tumors measured 2.4 x 1.3 x 1.3 cm, and the others were not that small either. No wonder this kid was choking! There is “hyperplasia” all over the place too. But it seems like the bottom line is, we got in in time.

Cowden’s we BEAT YOU to it!

Of course there is no crystal ball. There is no way to say for sure that it WOULD HAVE become cancerous, although I think we all know the reality. There is no way to know if it could have stayed in a little longer, but I like to think eliminating the anxiety over the constant FNAs, which incidentally had caused quite a mess of scar tissue according to the surgeon (THANK YOU COWDENS!) will be the better choice in the end.

It is ~~easy~~ easier, to make decisions about prophylactic organ removal when it is your own body. You just do what you have to do and move on. But my husband and I had to make the conscious decision to remove something from our child’s body. Can she live without it? Absolutely. But just because you CAN live without something doesn’t always mean you should, and it doesn’t mean that removing it is without consequence or effect.

As a new mastectomy patient I read lots of stories of brave young women who had decided not to spend their lives waiting for cancer to get them. They had taken steps, usually to get ahead of BRCA1 or BRCA2. I immediately admired each of them. They somewhere along the line coined the term “PREVIVOR.”

https://www.facingourrisk.org/FORCE_community/previvors.php

Primarily used to deal with the risk of hereditary breast and ovarian cancer, I think the term has a broader reach. My girl does not need to be a thyroid cancer survivor. She is a PREVIVOR. She got there first.