“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!

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.

Groundhog Day

Published on June 17, 2014June 17, 2014 by beatingcowdensLeave a comment

“Groundhog Day” – who doesn’t remember the movie? There have been plenty of days I have thought of it. I may need to watch it again soon.

Pediatric Endocrinology is a ridiculously small sub specialty.

There is this web of interconnections, and all sorts of people who have lost sight of the patient.

Ultimately I may need to head out-of-state to try to get a clean opinion. But, I have to take that and so many other things one step at a time.

But, after the travesty on Thursday, I was left with little choice but to keep me appointment with the surgeon at our current hospital.

You remember the surgeon?

He’s the one who did a great job on the surgery. The one who said, when we went for the follow-up, that he only needed to see her ever again if she felt anything in her neck. And when she did feel something in her neck I had to jump through 12 hoops to convince him he should see her. And then when he saw her, he proclaimed the lump a salivary gland and told us to return “one more time” in a few weeks.

But then there was that horrendous week in the hospital. And while she was being treated for gastritis, a hematologist felt her neck and said, “It’s a lymph node.” So they sent her for a sonogram which said it was a lymph node.

So when we went back to see the surgeon and brought him the sonogram report he got annoyed and ordered his own ultrasound, which we got to wait 3 hours for. And then he called me to tell me everything was fine, even after the 45 minute exam where the tech measured the lymph node in her neck. So we were good to part ways until I asked for a copy of that report too.

And 10 minutes later my cell phone rang telling me doctor “I am sure it’s fine, but just in case,” wanted to see her again. So after some haggling we arranged for June 16th at 1. Which was ok. Until they called me Friday to tell me I could come in at 9:30 or 10:45. “How about 1, like you said originally?”

So the appointment was set for 1, and I punched out of work at 12. We got to the hospital at exactly 1 (a 20 mile drive) after some typical traffic, and a near miss of a three car accident in front of us on the highway (thank you angels) on line for the parking garage. I called up to let them know we’d be a few minutes. And we sat. And we sat And we sat.

Finally we began to inch forward just a bit. Then there was just one car in front of me.

And he was not paying a bit of attention, as a large black SUV cut right into the front of the line.

Now at times like this I try to focus. Maybe there was a medical emergency. Maybe… Maybe…

So as much as I wanted to get out of my car screaming, I held my composure and talked about all the reasons they might have done that. Until a hospital employee, likely late for work, surfaced as the driver. He left his car across the sidewalk, took the ticket from the attendant and raced into the hospital.

It was 1:35.

And then I noticed some scurrying.

I thought the car was stuck.

It turns out the self-important line cutter had taken his keys- blocking the entrance and causing the line of 20 cars behind me to continue to grow.

The car was booted and moved.

We got to the appointment around 2.

The doctor spoke to Meghan. He asked her how she was doing. She told him about her pain. And about her throat clearing. And about how tired she is. She mentioned working hard to get so swim practice.

I don’t think he heard a word.

He felt her neck and proudly proclaimed he felt nothing. By now I was so tired of this I just wanted to get out. I figured we were done. I was glad he could feel nothing. If only I trusted him. Truth be told, I haven’t put a hand on her neck in 4 weeks. There is just no point.

“I want to see her at the end of the summer.”

WHAT?????????????????????????????????????????????????????????????????????????????????????????????????????????????????

3 visits ago he never wanted to see her again. Now he has ultrasound and 2 visits at which he told me she was fine. Let it go. Unless of course, he just doesn’t quite trust himself…

“I’m glad she’s feeling so well.”

EXCUSE ME?????????? Did you just see MY kid? Because MY KID is incredibly polite, and often very positive. She is articulate and bright, but she will NEVER tell you she feels WELL. She doesn’t believe in lying.

Some days this is like a bad movie. Or a dream where your finger is stuck in the door and it keeps closing over, and over, and over again.

August 18th.

Damn.

So much for a month without doctors.

When do you, as the Mom, put an end to it? Knowing that any “miss” falls right on you, it’s so hard to defy their recommendations, even when their competence can be questioned.

Rheumatology on the 30th. GI on July 2nd, and Pediatric Endocrinology AGAIN on July 3rd. And that’s just the first week.

I guess I better plan something fun for the 1st. Something worthy of a stepping stone for that bridge…

Her entire right side hurts to the touch tonight. Every natural pain remedy I research has something her reflux doesn’t allow.

She fell asleep tonight reading her Bible. Our Pastor sent her a long letter with some great verses of comfort. She hasn’t stopped rereading it.

Sigh…

Two hours to get in. Two hours to get home. Less than 30 minutes on the floor of the hospital.

“This is getting old Mom.” Wise kid.

“‘Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise” – Laura Story

Snow Boots

Published on June 12, 2014 by beatingcowdens7 Comments

The winter boots are still in the closet.

It’s June 12th.

Actually Meghan’s room has a basket of winter boots that are not only off-season, but are too small for her.

It’s June 12th, and that is definitely a new record for me.

In my old life clothes got changed systematically in April, and early October. Jackets got washed, shoes got put away.

That was my old life. I don’t remember it much.

I don’t really have a big closet. The spring shoes are upstairs in the hallway. All over the floor. I’ve been getting one pair at a time as I need them, but if I don’t hurry and make the switch soon winter shoes will take over my bedroom floor.

Thankfully, Mother Nature seems confused about the season. That is buying me some time.

In my old life, nothing was really on the floor – ever.

We went to the doctor today. Shocking news really, I know.

We went to the doctor today in hopes of replacing the endocrinologist with someone more open-minded, and “outside the box.”

EPIC FAIL.

What we got instead was a closed box, closed-minded,”I won’t take on your kid, so stay where you are” doctor, in a really bad suit. (And I’m not much about fashion – so you know it was a REALLY bad suit.)

I had lots of time to look at her, and the suit while I used my hand to keep my mouth from spilling out my actual thoughts and embarrassing my daughter.

I brought the 3 page synopsis of tests, hospitalizations, and medications.

I brought the 3 INCH binder full of lab tests and pathology reports.

I brought the CD of the neck sonogram.

She glanced at her most recent blood work. She told me her TSH was too high. She told me she needed more Synthroid. She told me her current team was just fine. Then she told me twice they were better suited to treat a Cowden’s Syndrome patient than she. Feel like a leper much?

I asked all sorts of questions. I asked about T3, and potential problems with synthetic absorption. I reminded her that in addition to PTEN she has an MTHFR mutation which impacts her ability to process B12. I asked if there could be anything else she has trouble processing. (Hint Hint… synthetic thyroid hormone?)

“You’re very smart,” she tells me. “You know a lot,” she says. Yet, she deflects my questions like a goalie with a hockey puck.

News flash. I don’t need stroking – just answers.

But I watch my tongue. And I watch my tone, because my daughter is watching my every move, my body language, my attitude. She is using my response to gauge whether she needs to be uptight.

I asked what was the upper limit for synthroid. I was told there was none. I was told that the dose would just continue to be increased. I was told she would likely reach .200 mcg. I expressed concern. I was told not to worry. The body only absorbs a percentage of the synthetics. Um, that would be the point of my worry. She doesn’t have a good history of secreting junk.

I got a lesson on the pituitary and the up and down regulation of TSH. I was told when to dose the medicine. I reminded her I have been on thyroid replacement for 27 years.

She asked me if she had answered all my questions. In my old life I might have politely said, “yes.” But, this is not my old life. I smiled, shook her hand, and said “No, actually you didn’t, but I don’t think you know the answers.” Then we left.

In my old life things were neater, and more orderly in every aspect. Sometimes I miss the order. But not for long. There is nothing orderly about this kid, except her behavior (98% of the time,) and I am learning to embrace the chaos.

She woke this morning feeling like real crap. Exhausted from swim practice (she made it almost through) and fifth grade trip yesterday. She hurts. She is mellow. She has fun with the kids, but she’s not herself.

Maybe it will just take time, but hours and weeks and months of childhood seem to be ticking away.

I pushed her today to start making dates with friends for the summer. Her friend’s parents must think I am weird.

It’s as important, or MORE important to plan pay time as it is to plan doctor’s appointments – for so many reasons. And since we have so many appointments, I want to start with the friend time – NOW.

We live in the middle of New York City. One would think finding pediatric endocrinology in the mood for a challenge would be much simpler than this. Instead I am left to return to the surgeon on Monday, so he can validate himself by telling me he doesn’t feel anything in her neck. And then, back to see the resident of her endocrinologist in July. (The actual doctor takes off February, July and August – so he has yet to see her since the surgery.)

Life is not ours to plan. But, we have to try to schedule the fun stuff before the days get away.

We RSVP while holding our breath.

There is more “One day at a time…” than I have ever known.

Maybe there will be some time to get those snow boots away. In the mean time, if you do stop by- don’t judge the hallway. Or the closet. Or the dog fur.

I took a walk yesterday, and another one today. I listened to music. It’s a slow process, but I am working on my emotional health.

It seems to be the only thing I can control.

I am working on those foundation stones for Meghan’s bridge.

And in the mean time, if you happen to need any snow boots – I can get them for you in a hurry. I know exactly where they are.

Live Deliberately

Published on May 31, 2014May 31, 2014 by beatingcowdens5 Comments

Live deliberately.

From time to time, as I am working hard to get out of my own way, the words of Henry David Thoreau creep into my subconscious.

Live deliberately. On purpose. With a purpose. With goals. With faith. With belief that it all matters. Not just in this world, but in eternity.

There are countless things in this life that are running out of control.

Last week in church, I held the hand of a woman who is trying to establish her life here in the United States while her family originates half a world away. I know very little about her, but I cried with her as she was enduring the loss of 6 family members who had all died in a car accident. Out of her control. Immeasurable pain. No words. Just prayer that she arrive safely to be with her remaining family.

Then there is my internet friend in Australia, whose daughter has endured more brain surgeries than I can count. This week things went badly. The surgery was aborted. They had to make a new plan. Her daughter- beautiful, 20ish, and full of life.

And another story I follow closely, of an acquaintance whose mom became septic in December after routine surgery. The trials cause my heart to ache.

We could all list stories here. Heck, I could go on for pages, the old friend whose brother is battling cancer… and so on.

I could fill this page with the struggles of my daughter this week. Battling the demon that is Cowden’s Syndrome – and whatever else has crept into her body to accompany it. I could write about the nights spent holding, and wishing, and praying that the pain be gone, or that God help us make some sense of her agony. I could continue in frustration about the thyroid hormones all askew. And the general lack of knowledge that greets us at most facilities. But I won’t. At least not today.

Today I am reflective about Thoreau’s words. Today I am thinking about what it means to live deliberately.

I can not control tragedy.

I can not control pain.

I can not control sickness.

I can not control sadness.

I can not control life’s twists and turns.

I can not control the course of Cowden’s Syndrome or any other aspect of our lives.

No matter how badly I want to. I can’t.

And, I also can’t make sense of most of it.

So, I have a choice.

I can sit here and mull it over. I can feel everyone’s hurt and pain. I can reflect on the unfairness of it all – or I can live deliberately.

I choose to hug my husband. Because I don’t do that enough.

I choose to rub a dog’s belly. Because it’s good for both of us.

I choose to eat well, and get and stay as healthy as I can.

I choose to be involved in passionately sharing my love for good nutrition and the products helping me find it.

I choose to take a deep breath when I am stuck in traffic.

I choose to deliberately try and turn lemons into lemonade.

I choose to use my grief over the loss of my loved ones, and channel my energy into the most positive outlets I can find.

I choose to get involved in raising awareness – of Cowden’s Syndrome and other RARE diseases.

I choose to get involved in things I feel passionate about, and not in things that bring me down.

I choose to advocate tirelessly for my daughter, and any other that I can help along the way.

I choose to always make sure I have an extra spoon for my daughter – or a friend in need.

I choose to laugh – at myself as needed!

I choose to pray.

I choose to be a friend.

Because to live deliberately doesn’t mean life will be easy. It doesn’t mean life will go well, or the way we want it to. It means making a choice to find what you can, dig deeply for the beauty that is abundant in the joys, but also hiding in the sorrows.

To live deliberately doesn’t mean I won’t be sad, or mad. It means I will have ALL the feelings – on purpose. Because to truly appreciate life I must experience all things.

I choose to do one thing I enjoy every single day.

And today I choose to take a walk.

How will you live deliberately today?

Glorious Unfolding

Published on May 14, 2014 by beatingcowdens2 Comments

Lay your head down tonight
Take a rest from the fight
Don’t try to figure it out
Just listen to what I’m whispering to your heart
‘Cause I know this is not
Anything like you thought
The story of your life was gonna be
And it feels like the end has started closing in on you
But it’s just not true
There’s so much of the story that’s still yet to unfold

And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
You’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding…

Steven Curtis Chapman

I believe in God. I believe in the power of prayer. I don’t believe in a predestined life, but I don’t believe in coincidence either.

This song was playing in the car last week one night. Meghan was having a tough time of things, and I had gone to clear my head. When I came home she was still awake so I downloaded it to her Ipad. We laid together in her bed and held each other. The tears flowed. The comfort of each other, and the comfort of the knowledge that we were not alone – not abandoned – ever – eventually allowed her to rest.

The song is in her playlist for “bed.” It is a beautiful compilation of songs with a purpose. And as I sit, in a dark hospital room, on our 6th night here the songs play in the background. Their messages soothing for my tired soul.

I didn’t want to be here. I mean not in any hospital, but especially not in THIS hospital. Somewhere along the line I had decided that I would NEVER want to be HERE.

Well that was my first mistake. Cause really, it’s not up to me. And that is a hard reality to accept.

The pediatrician works from here. They respect him. We adore him. He loves Meghan like a granddaughter. She was really sick. If I headed anywhere else I would have been flying blind.

They moved at a pace I sometimes felt was too slow. But, I as an anxious Mom, am in no position to judge pacing.

There were staff I could have done without – so I excused them from our room. But not most of them. Most of them have been kind and compassionate.

Being local allowed for FAMILY and FRIEND visits, and even a visit from our pastor, which mean so much to Meghan on really long days.

The tests were run one at a time, but they all mattered.

Once they realized how much the IV – and all its complications – caused her grave anxiety, they took extra care.

The dietary team has done their best with a complicated kid.

The GI doctor has been thorough, professional and meticulous. She had read about Meghan and about Cowden’s. She TALKS to the pediatrician, and our hematologist in NYC, and the ENT we will soon see.

The lab tests were all inconclusive.

The sonogram didn’t tell us anything.

The CT scan was essentially normal.

The medications, continuously adjusted, have provided little relief.

So as we prepared for the endoscopy we were anxious.

See, you never WANT anything to be wrong. But then there is a point where you KNOW something is. Then you worry about finding out what it is, or NOT finding out. It’s hard to know what to be more worried about.

Heading into the test today we were both anxious.

They say a picture is worth a thousand words.

We have pictures now.

Pictures of a GI tract so damaged by SEVERE Gastritis that it will take months to years to recover it. She has damage from the top of her throat straight down into the beginning of the small intestine.

Inside the stomach is evidence of ulcerations. Many.

The esophagus that should be smooth – a mess of bumps and sores.

Remind me to NEVER EVER EVER doubt her tolerance for pain.

This one is a favorite of a dear internet friend :-) — This one is a favorite of a dear internet friend 🙂

The pictures make me ill. Because they are evidence of MORE suffering in my young girl.

To her they are vindication. And that makes me sad too.

She hurts every day.

She says it. And I tell her I get it. But I don’t think I do.

Pain like THAT has to be isolating.

Because every day she has to get up and function anyway…

And not too many people her age would even try to relate.

The GI told me she sees damage like this “every once in a while” in patients, but they are always 50 and older.

She told me the biopsy will likely show it to all be medication induced. The medication I have given her for years. The miracle drug that kept her mobile.

We will wait until next Wednesday in her office to look at the pathology, and to review every prescription and supplement that crosses her lips.

In the mean time there is medicine to control the spasms in the stomach every 4 hours. There is medicine to try to control the acid so maybe she can start to eat.

There is more time off from school. At the tail end of 5th grade. When the days are supposed to be fun.

There are MORE dietary restrictions.

But somewhere in the pain is vindication. For the girl who knows her body better than any doctor. There is proof. There are pictures.

But I don’t believe in coincidence.

This is her second GI related hospitalization since her thyroid was removed. That’s weird.

Her thyroid numbers are NOT normalizing. So she has been “hypothyroid” for three months.

I mentioned it a few dozen times this week. No one bit.

I’ve hit google. And my sister’s friend hit on an article too. I will keep looking.

Somehow this is all connected. The thyroid. The medication. The pain. The gastritis. The Cowden’s Syndrome.

But I have to be patient. The pieces will come together. In time. With hard work. And good doctors. And prayer.

We prayed today for an explanation. We asked for an answer to explain her pain. Our prayers were answered.

Now we pray for healing. Of her tired body. And her tired mind. We pray for the development of a TEAM of smart doctors who communicate, and we recognize with gratitude it all began where I never wanted to be.

There is work to be done. There are more concerns to be addressed. The road will continue to have bumps and twists and turns.

But somewhere along the path there is time to be grateful – for the GI who trusted her gut and did the scope TODAY. For the anesthesiologist who repaired a failing IV while she was ASLEEP. For my girl who gets to say “see this is WHY my stomach hurts.”

And that’s all I can process for one very long day.

I think I’ll sleep between the midnight and 4 am doses.

The IPad is playing our song…. this is going to be a “Glorious Unfolding.”

Steven Curtis Chapman

State of Mind – Part 2

Published on May 5, 2014 by beatingcowdens1 Comment

There is something about sitting in a room full of pediatric cancer patients that numbs you, amazes you, and astounds you all at the same time.

There was a time when the little superheroes, the miracles walking around us, and the significance of it all may have gotten past Meghan.

She is older now. More weathered at 10 than she should be. She misses nothing. And to a child who has heard the word “cancer” spoken to her, around her, and beside her, her entire young life, she is acutely aware of its presence in the world.

With Cowden’s Syndrome comes cancer conversations. Is a little fancier when you describe a “PTEN mutation, as causing benign and malignant tumor growth,” but the meaning is the same.

Anyone can get cancer. At any time. And certainly it’s almost unlikely that any of the children we saw today have our “Cowden’s Syndrome”

However since Cowden’s Syndrome, and cancer become so closely married – it is hard to consider one without the other, and days like today are especially draining on both of us.

We left the house at 8AM, and sat in traffic before arriving at our destination, (a route Google Maps tells me is 20.5 miles)at 9:40 – 10 minutes late for our appointment. We then sat a good deal more, until almost 10:40, with plenty (read way too much) time to observe.

The facility is clean, and neat and tries to be festive. Children were celebrating Cinco de Mao among chemo pumps, bald heads and IVs. I watch and try to think nothing. Because it is fortunately IMPOSSIBLE for me to know how they feel, or what they are going through. But, an adjacent conversation involving a thin, beautiful, bald 5th grade girl and her dress for the dance was difficult to avoid completely.

We were met with the familiar and friendly surgeon who wasted little time before examining Meghan’s neck. He felt and thought and asked questions. “Has she been sick, any fever, trouble eating…?

“No, no, no.”

“Well, I don’t think there is a problem. I think it is probably OK. But just to be sure we’ll have you come back in 2 weeks. If it’s not gone we will scan it then. Oh, and you should see why her salivary gland is enlarged. It’s not just the lymph node.”

“With whom would I check that? Because for 6 months I have been talking about incessant throat clearing and all I get are theories. The last ENT told me to see a GI. Have you ever heard them laugh when you bring in a 5 foot 2 100 pound 10-year-old? I have. Any suggestions?”

Silence.

“Ok then, we will get you set up with an appointment 2 weeks from today.”

I had come in hoping for an all clear, or perhaps a 3 month review. 2 weeks had its pros and cons, and Meghan and I weighed them, silently and independently as we headed back to the elevator.

We arrived home at 12:20. Four and a half hours. Insanity.

This afternoon I was stressed. Over nonsense. When I am anxious I have an incredible need to control nonsense. I have been stressed a lot. I need a new outlet. This one is making me not so much fun to be around.

I heard myself today. My tone, my body language. All so negative. Not like me, and not the person I strive to be.

I was brought back on track by my own superhero. Only the strongest can share what’s on their mind and in their heart. That’s why I love her so.

Wise beyond her years. Worried about things she should never even have to think about. Yet still able to find the simple beauty in the world around her.

I took a “time out” tonight to regroup. She nestled up with Daddy. Warms my heart to see her in my bed.

My nighttime prayers include the many who had their own medical adventures today, and my girl. That she may know the joys of childhood… and for me, that I will remember to enjoy watching before they pass me by.

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…

It’s not a sprint… It’s a marathon

Published on April 22, 2014April 22, 2014 by beatingcowdens3 Comments

I’m not a runner. At least not in the traditional way my sisters run. I don’t really run unless I am being chased. Tried it for a while but the knees and the back weren’t interested. So the only running I do is from appointment to appointment.

I guess I run- in a metaphorical sense.

This has been a busy week at our house. In addition to the host of emotions Friday, we spent the earlier part of the week addressing mandatory appointments – as it seems we do with every single vacation. It’s old I tell you. It’s old.

Monday was physical therapy, and then additional genetics for me. THAT will be a follow-up in and of itself.

Tuesday was our Integrative Medicine doctor on Long Island. The one who listens carefully and THINKS about my child before making a move. He ordered a slew of tests. He is concerned that ALL food seems to be bothering her stomach to some degree. But, he didn’t rush us out to a GI. He knew we’d get brushed off. At 5 foot 2, and about 100 pounds, my tall, thin, beautiful girl is hardly the poster child for malabsorption. But he knows me well enough to know that I am overloading her with nutrient rich foods to compensate.

We had a wonderful, long talk about nutritional cleansing, and how I would have given my eye teeth for products like the ones I use now to have been on the market 9 years ago when I began my journey with Meghan. He will look, and sample. We will talk.

But, he no longer blames one food for Meghan’s pain. He thinks the balance of her gut, from years on edge – needs some help. He has suggestions. We will wait for the lab work. Half done last Thursday – the rest tomorrow. Then we will talk. On the phone. And we will make a plan. Have I mentioned how nice it is when you have a doctor who is a fully compassionate human?

And Wednesday there was chaos. A 9:00 for me at NYU with my oncologist. She reviewed my MRI to tell me the spleen tumors are growing – slowly. But, they can stay for a while. Whew! And the cysts on my kidney I forgot all about – stable as well. WIN!

And then there was Sloan for Meghan. Blood work first. Then a follow up with the surgeon who cleared her from the thyroid with no need to return again. Of course even after waiting almost 2 hours for that appointment – the blood wasn’t in. And our endocrinologist was “otherwise engaged” and unable to see us on a Wednesday. So rather than come up twice, we opted to have him just review the blood work.

Then we squeezed in a visit to the ENT who took her tonsils out- hoping he could shed some light on 6 months of throat clearing. We left with the assurance that he had no definitive diagnosis, and he doubled her reflux meds and prescribed a new nasal spray, for inflammation in the nose. That he wasn’t sure was allergy related… I have to call in 2 weeks. Anyone picking up a trend?

The call from the PA about the AM lab work came around 4:30 while Meghan was at swim.

“The thyroid numbers are essentially unchanged, so we are going to raise her medication.”

Me: “How could that be? you raised her dose 6 weeks ago when the TSH was 10.69.” (reference range high is in the 4s)

“Obviously she needs a higher dose.”

“What was the TSH?”

“We are going to raise her dose to 125mcg” (Essentially my dose)

“WHAT WAS THE TSH?”

“The doctor feels this will help get her numbers in range.”

“WHAT WAS THE NUMBER OF THE TSH?!!?!?!?!??!”

Finally…. “10.54”

Me,” Down only .15 in 6 weeks? What is the problem? Did you test her T4 and T3?”

“Only the T4 and its normal.”

“Why not the T3?”

“It’s not relevant.”

“REALLY? Why?…” After no response I continued,”When you have a patient not responding traditionally I would think that you would run every test to get the greater picture.”

“We don’t believe in T3” (To which I actually laughed. It’s not like it’s Santa Claus or the Easter Bunny!)

“What do you mean you don’t believe in it? Obviously Meghan is not absorbing the synthroid and there has to be a reason. I think we need to start investigating before she is hypothyroid for too long.”

“Well, Mrs. Ortega I think you and I are saying the same thing. She needs more medicine.”

“No, I am saying let’s figure out WHY the medicine is not working. You are saying to continue to raise the dose of what is NOT working without looking at possible reasons why.”

“Well we will see in 6 weeks.”

Yep. And for 6 more weeks she will drag her exhausted bottom around – so hypothyroid I know I would barely function. Hopefully by then I will have found us an endocrinologist willing to accept that there is no “box” Meghan will fit it. There is not rule her body will not defy. I am appalled that I am supposedly with the best of the best. Leaves a scary feeling in your heart.

Onward to the doctor search.

The mail arrived this morning, as we were headed to the orthodontist. There was a script for Meghan’s next thyroid test. There was no copy of the labs. They HATE it when I ask for the labs. So I called and insisted they be EMailed to me. It was quickly clear why they didn’t send it, as another test was disconcertingly out of range. A quick forward to my LI doctor… and we wait.

As we headed out to the orthodontist the mood was light. Meghan was ready to take impressions for the plan to remove the braces next month. And when they called me o the back to tell me her bite had “over-corrected” and it would take some time to fix – I just about took the deep breath I needed to speak quietly.

Basically I was being told that because my daughter did EVERYTHING she was told to do religiously she had done TOO good of a job. Now her overbite had been corrected into teeth that meet to closely. She stared at me. I attacked a bit. I asked why they thought it was OK to month after month make promises that were not to be fulfilled. Perhaps it was ok for her to get defensive. Maybe I was attacking. But, I don’t understand why you say so much to a child. From the beginning she was flat-out promised her teeth would be ready before her 5th grade graduation. Now she is getting a MAYBE for September? Don’t misunderstand me. I want them on until they are done. But my issue is that SHE sees the doctor and his staff alone. THEY say whatever without me being there. It is NOT ok for you to INTEND to be ready for impressions, and then have things go so wrong in 5 weeks that we appear to be set back 3 months!

The doctor obviously got the message I had had enough. I like him. I really do. And he came out to say to me he …wait for it… had NEVER seen anything like this. How UNUSUAL it was. And how 99% of the time things run according to plan. He apologized. I reminded him that I had already told him several times to be careful with my girl – she’s not a “typical” case of anything. I asked them all to watch what they said moving forward. But it was too late.

To Meghan the message was clear. She was once again the “unusual” case, and once again. And to make matters worse this time her GOOD behavior may have contributed. What a tough message for any kid.

This is the part where I caution you – friends and family alike to withhold any comments about how it could be worse. Or how its good the teeth are set right before the braces come off. Or your friend/cousin/brother/kid had their braces on for 5 or 6 or 7 or 8 years and she should be happy it will only be 2. Because really, at some point something should go her way. At some point when the orthodontist (who mind you she has been working with on appliances since just after she turned 7 (4 years in August)) says 18 months for the braces, that it should just be 18 months. Because that’s what happens to the “normal” kids.

We have not lost our grip on reality. I promise. We get it. But some days… some days I have to wonder where the limit is.

Some days when she complains that she just wants to be “normal,” and I try to assure her she is. I remember days like this at the orthodontist. Or the 2 days it took her to recover from a 3 hour outdoor play date earlier this week. Or the “fake spring break” that had more trips to doctors than anything else – again. And the follow ups that will continue in the weeks ahead.

I cried when we left the orthodontist office. I cried because I sometimes am just so frustrated at how much she is asked to endure. And she sat. Quietly. Until we got home. And she screamed a loud piercing scream. And we hugged. Because we know we are in this together. And we know no matter how bad it gets, not matter how tough it is – we have to keep on keeping on.

Tonight I stopped at the mall and bought these.

One for each of us. A reminder about the meaning behind all that metaphorical running.

The car got towed today. The old one. I think its dead. Permanently. We have an appointment to get the oil changed on the new one at 8 am. We’ll talk to the mechanic then.

Then there is that fasting blood test at 10:15.

The whole identity theft thing seems almost ages ago.

No wonder I don’t run for fun. Too busy running as a way of life.

No worries – We are BEATINGCOWDENS!

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.