Champions of HOPE

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Two years have gone by.

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

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

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

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

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

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

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

“HOPE it’s in our Genes!”

We are BEATINGCOWDENS!

Finding my “Happy Thought”

Published on June 28, 2014October 23, 2019 by beatingcowdens1 Comment

It was a few months ago. I can’t quite recall the date. It wasn’t my finest hour. (or day, or days…)

I was grumpy. Worried. Angry about the struggles my girl was being forced to endure. Twisted about a future of doctors appointments and surgeries.

I had noticed she seemed extra down, and I took it as my cue to worry harder.

At some point, I broke down, expecting a clear answer to the question, “What’s wrong?” so I could continue the business of worrying some more, and searching for answers.

But the answer wasn’t even close to what I expected.

“Mom, you need to find a “Happy Thought” because you being like this all the time is really affecting me.”

Um, ouch. Wow. And she sure told me.

She wasn’t being disrespectful in the least. We have worked on honest speech and clear language, for survival – and to help us prep for the teen years. She was doing exactly what I asked of her. She was telling me what she was thinking. And she was right.

Years of parenting a chronically ill and allergic child have left me in a permanent hyper-vigilant state. The “other shoe” has been known to drop without warning, and there is a constant need to search, study, learn, and discover whatever I can about whatever is plaguing my girl. I am her advocate. I am her voice. We have between us undergone at least 17 surgeries in the last 11 years. That doesn’t include countless hospital stays, tests and procedures. There is always a pile to contend with, whether its bills to fight or file, prescriptions to order, reports to hunt down or appointments to make. Life is very busy.

There was a time I used to walk for fun. Hours on end with my music in my ears. I would walk for miles. I would walk everywhere. There was a time I would read for fun. Not medical books. Just leisurely reading. I used to watch “Law and Order.”

Now between working full-time, parenting full-time, chauffeuring to appointments, trying to make swim practice, keeping food in the house, keeping some semblance of order, including clean laundry, clean curtains, and clean cabinets – it was easy to get swallowed up by obligation and forget the joy in my life.

To be quite honest with you, there isn’t much I would change. Do I sometimes miss those long carefree walks? Definitely. But, would I for one second trade one bit of my beautiful, tenacious, funny, stubborn, intelligent little girl? Not a chance.

We watched “Hook” a few months back. It was a rare occasion when I sat to watch a movie. It is one of my favorites. And for those of you who might not be familiar, it’s a “Peter Pan” spin off where Peter ended up all grown up – a lawyer. He forgot his magical youth, and the story takes him back to Neverland to find it again.

I am sure this is where she got her admonition for me to find my “happy thought,” as Peter needed his to remember how to fly in order to beat Captain Hook.

I thought and I thought, long after she had said the words. I was tempted to compare myself to other adults, and justify my grumpiness. But I resisted the urge. These words weren’t spoken to another adult. They were spoken to me. And what a gift she had given me.

Transformations don’t happen over night, but I have forced myself to become aware of the things that give me pleasure.

I love to write. And so I have been trying to give more attention to my blog. Therapy on a keyboard.

I have taken my feet instead of the car wherever I can, and wherever time allows. I can’t walk for hours, but I can appreciate the short walks and relish them more.

I am realizing that a happy Mom is some of the best help I can give. I won’t know all the answers. I can only give her the same honesty I ask of her, and I can only do my best.

And while we focus on being positive, and its something I ask of her all the time – it’s not fair to ask it and not model it.

So we are all a work in progress.

And when I really soul search for what makes me happy, my pleasure really lies in seeing other people happy.

I am constantly telling Meghan that Cowden’s Syndrome does not define us. But, in fairness, actions speak louder than words.

It’s been months since I was told to find my “Happy Thought,” and I hope I never forget that day. While we still have our ups and downs it serves as a reminder for me that I am no good to those I love unless I find happiness myself.

Meghan and Felix – they will always be my happiest thoughts.

But I love my family, and God, and exercise, and nutrition, and cool breezes and music, and flying birds, and summer…

I strongly encourage you to find your “Happy Thought.” It’s tough to start looking when a 10-year-old calls you out.

Loving my heart - outside my body- my biggest happy thought. — Loving my heart – outside my body- my biggest happy thought.

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

Building Bridges…

Published on June 9, 2014June 10, 2014 by beatingcowdens7 Comments

It’s been a while since I’ve written. If I have my way I’m about to get so focused that you’ll get tired of hearing from me.

Life has become a bit overwhelming. And some days all of this, this whole chronic illness thing, is just too much to handle.

There are days the path looks like this.

There are days when it is easy to wonder, “What now?” or, “What next?”

But that is the very mindset that can find us in a heap of trouble.

So we are trying to work on shifting our focus. Instead of panicking when the bottom feels like it’s falling out, we are working on reinforcing the structure.

We all need a bridge, a support system of sorts.

With two members of the house who are the 1 in 200,000 unique that comes with having a RARE Disease like Cowden’s Syndrome, it’s so easy to let the illness try to creep into your identity.

I don’t talk too much about me. Mostly because as any Mom, my needs are second to those of my girl. But, I too get overwhelmed. And when I feel like Cowden’s is trying to choke me out – it’s time to pause and reclaim.

I am more than the paperwork and medical records. I am more than the bills and prescriptions. I am more than the scheduling and the appointments. I am more than the mastectomy scars. I am more than the synthetic thyroid hormone.

I am a mom.

I am a wife.

I am a friend.

I am a Christian.

I am a teacher.

I like music. I like reading John Grisham. I enjoy Law and Order. I like to laugh. I CAN’T get by without my Isagenix, and my Ionix. I appreciate photography, and I really, really like to sleep.

And with each piece of my identity, the pieces of my foundation get stronger.

There are things I have to do as a person with Cowden’s Syndrome. There are things I have to endure. There are an unnerving amount of tests and appointments and the constant nagging notion that things may spin out on a dime. But if I am honest – isn’t that what life really is – for everyone? While the issues may not always be medical, the reality is that despite our best efforts, we have no control. So, we do “the best we can with what we have where we are.”

And as I get my foundation in place. As my stones are strategically placed – so they can be stepping stones along the way if needed, I can work on helping Meghan build her bridge.

I figure once I have it together enough that I can catch her if she falls… she’s free to establish her own pace, and find her own way.

We will forever do outreach work. We will forever share our story. We will forever create fund-raising opportunities for research. That will be part of our lives. Cowden’s Syndrome will be part of our lives. But it will not BE our lives.

My daughter has seen more in 10 and a half years than most adults see in a life time. She has been medically poked, prodded, and cut. She has been in and out of hospitals. She has seen doctors hired and fired. She has been listened to and she has been ignored. She has had arteries ablated, and a body parts removed. She has vomited pure bile from a stomach torn apart from pain medicine. And she has pushed each day through that pain. She tries to be like the other fifth graders, but she struggles. She struggles to be understood and to fit in.

But, from my stones, my own developing identity, I can see her clearly. Perhaps more clearly than she sees herself some days.

I don’t profess to know all things. She’s a bright preteen. There are things I’ll never know, and that in and of itself is OK, and normal, and even healthy.

What I see when I look at Meghan is not Cowden’s Syndrome.

I see a beautiful smile. I see a kind heart. I see compassion. I see love. I see competitiveness. I see a swimmer. I see a singer. I see a reader. I see someone who loves to play hard, and relax just as hard. I see raw determination. I see high standards. I see someone, a young woman who makes me proud to be her mom.

This summer we are going to work on building. I want to be able to provide her stepping-stones. And then I want to help her build her bridge, with a healthy mix of guidance and independence.

I want her to see she has Cowden’s Syndrome, but it does not have her. It is an inconvenient part of our lives – but not our entire lives.

We are going to make memories. We are going to create situations that have nothing to do with doctors or hospitals. We are going to laugh and play. We are going to continue to “Live Deliberately.”

And we are going to write it down. It sounds so silly to think that we have to write down having time for fun, but we do – for now. Maybe one day it will become so automatic that life’s adventures will become common, and our medical world will fit in the empty spaces.

It’s not going to happen all at once. There will be days we have to remind each other. But, we will get there.

And along the way we will slowly build the team of medical professionals who look at us as people, and keep our best interests at the forefront of their practice.

Because as we become empowered, we will be rid of the others. Positive influences only. We deserve that.

She made swim practice tonight. No small feat.

The pain – evident, but managed.

Endocrinology consult Thursday.

Hopeful.

A balanced thyroid certainly would help a few (dozen) things…

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?

“Dear whatever doesn’t kill me, I’m strong enough now. Thanks.”

Published on May 24, 2014May 24, 2014 by beatingcowdens4 Comments

I needed today. For so many reasons.

Even thought Meghan had 2 appointments today – 11:15 and 12 – it was a good day.

We all slept. Late. All three of us. I mean 10:00. A good sign that we – all three- are shot.

I mean, not a whole lot changed from yesterday, in that it took a full 10 minutes before Meghan’s pain subsided enough for her to walk. And she was sensitive to the touch, so it was even hard to rub her. But everything is a little better at 10 AM.

And there was the Isagenix shake – blessed by her GI doctor, back in the mix made with blueberry and coconut milk – that went down smoothly as she took the new regimen of pills. I finally have a doctor who understands quality nutrition, and who “gets” that you can be sensitive to one type of milk protein and not another.

And after the appointments, even though I got the frustrating news that the “it’s broken, it’s fixed, it’s broken, it’s fixed” 1996 Saturn has likely advanced to “deal with it – it’s done” status, it was still OK.

Because we got home, and then Felix made lunch. I stayed home with Meghan and her “better but not gone” stomach pain.

After that he took the working car to get the wood for the deck railing that has completely rotted out.

No one can really explain that – but we are kind of used to it.

The deck – pressure treated wood – was put together between 2000 and 2004. By all accounts it is falling apart. And its not from faulty construction. The base is solid. The center is stable. But the galvanized screws are literally wasting away – and the wood, especially the rails, is rotting. Maybe it’s too much sun. Maybe it’s a stain product we used early in its life. It really doesn’t matter. It’s done and has to go on the budget list for a full replacement in the near future. But for now we patch.

Triage.

The bay window wins. Installed in November of 2000 – on my birthday to be exact- the lower left corner of the center window has rotted out completely. The entire window – hole in the house and all – needs to be replaced.

So while Felix was getting the wood, he priced the window Tonight we have to do some comparison work. Then the order has to go in.

But this afternoon I sat still. For a few hours. And I really, really, really liked it.

It’s easy to feel guilty. That there are things that need doing. There are people who could use our help. And there are people who need to be visited. And there are phone calls that need to be made. But, last week my Mom told me if I didn’t take some time for myself I might lose my mind. She’s right. Although I could say the same to her, and most people I know. It’s hard for any of us to just stop and sit still.

I haven’t written since Monday. The arrogance I encountered that day kept me stewing for most of the week. And… I don’t think I’m over it yet. But I wanted to pull my thoughts together and go at it with a clear head. But if I keep waiting for a clear head I may have to stop writing forever. Because the pain my child endures – regularly- is horrendous and worsening.

If the purpose of this blog is to create a chronology of our experience with Cowden’s Syndrome – then it all has to be shared. The good, the bad, and the arrogant.

A friend who endures more than her share of struggles with her children placed this on my wall this week. I can’t tell you how many times I laughed out loud.

Tuesday I called the surgeon’s office after school to inquire about the sonogram. He spoke to me – to tell me that there is absolutely nothing wrong with her neck.

Insert sigh of relief here, right?

So I said thank you, and requested a copy of the report. It was to be emailed to me within 10 minutes.

And while I was processing the conversation I had with the surgeon, I was contemplating what I would see on the report. You see, the local sonogram bothered the surgeon. So when we went to have it done I watched the screen like the hawk I am. I watched every measurement, every angle for 30 minutes. I SAW the exact dimensions from the local sonogram recorded. And yet the report was the most incomplete one I have ever seen. It simply said “normal” several times. It was contained on one sheet of paper, unlike the three I had become used to.

I wanted to be relieved so badly. I wanted to take a breath and say “whew!”

But I feel the lump in her neck. And she feels it.

What I needed was a doctor to say, “It’s there and it’s fine.” THAT would have been OK. THAT would have settled me down. But, to say it’s NOT there…. THAT leaves me with a whole other set of unsettled nerves.

And then the phone rang. Again. And it was the surgeon’s office. His secretary told me we needed to go back for a follow up. I was stunned. And perplexed.

Why a follow up? He just told me everything was fine!

The doctor just wants to see her one more time before the summer.

This from the same surgeon who three visits ago NEVER wanted to see us again.

So I set the appointment for June 16th. And I wondered really what I am supposed to think.

So I got the number for medical records and I got a CD of that exam placed on CD.

I’ll bring the CD with us for the endocrine consult at ANOTHER hospital on June 12th.

And this isn’t even the pressing problem right now. Or at least we don’t think so.

The next set of thyroid labs are going to be next week. We need to see if this new dose is making ANY difference in her thyroid hormone. If it is, well great. And if it isn’t… someone needs to start figuring out what’s going on.

There is pain. All the time. Terrible pain. Worse when she wakes up. And, when she tries to walk, up the stairs. Or down. Or if she tries to lift something. Or bend to pet the dogs. Or run. She made it through 18 minutes of swim practice on Weds. Then I had to help her get dressed.

The pain varies in intensity. But it doesn’t leave. And she is frustrated. And frightened.

Holding my head in her hands, looking me right in the eye, I received the admonishment a few days ago, “I am telling you I can not do this forever. I can handle this pain a bit longer, but you NEED to help me. I CAN NOT do this forever.”

No pressure.

I get it Meg. I get it. I don’t really get your pain. But I get the urgency. I am all over it. Trust me.

But that kind of pressure will wipe you out.

The GI on Weds. was happy with her progress. The pathology showed cellular changes all through the GI tract. She told us of the spot in the stomach she chose not to biopsy because it bled as the scope passed over it. She gave us the “reflux” diet. She reviewed medication and supplements. She made sure I have an ENT appointment – for June 3rd. She things the upper esophageal damage is caused by a chronic post nasal drip. And maybe “fingers crossed,” that will be the throat clearing too. Because if not there is another diet – with more restrictions on the horizon. But we can’t race. We will see her in the beginning of July. We are clear on the directions. Especially the one that said, “no pain medicine by mouth.” The damage done by 4 years of NSAIDs will take months to reverse. If we are lucky. Her Cowden’s Syndrome cellular overgrowth reacted to the insult by thickening the esophagus at spots, inflaming the stomach and causing a real mess.

That doesn’t leave a whole lot of options.

So from 200mg a day of a strong NSAID to nothing…

I ordered some herbs. Some that have anti inflammatory properties. I have read and researched them and have sold them to her as the best thing since Celebrex. They will be here tomorrow. Let’s all pray I am right.

Some people think she exaggerates, because there are glimmers of smiles. There are times when she laughs. There are people who want her to feel better just because time has passed. Trust me no one wants this more than her parents.

I would not trade her – or a moment of the last almost 11 years, but this constant struggle is wearing on us all. We are isolated. Family and friends alike are often unaware of what to say, or do. We are afraid to eat anywhere other than home, afraid to be too far away in case her stomach hurts, afraid to be away from home for too long because the pain is often too much to bear. We are lucky, fortunate, blessed, to have each other. We are acutely aware of the struggles of so many, and we know we are far from alone when we say we are exhausted.

I needed today. I did random things like taking the 5 gigs of pictures and video off the iPhone. I uploaded them to shutterfly. I combined them with the family photos and I placed the first print order since August of 2012. We are up to August of 2013 now. You see I used to be all over this kind of thing. But life… it gets in the way.

And the nicest part about today was looking at the memories. The smiles. The happy times in those photos. You see today I needed to be reminded…

And that is what today was about.

Because next week there is Field Day, with prayers that there can be mobility by then. And next week there is blood work. And next week there is swim practice, and so many things that we want to go very, very well.

Today, I needed 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

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!)