Rare Disease Day

This is it!

Published on February 27, 2013February 27, 2013 by beatingcowdens2 Comments

Yesterday was another trip to the rheumatologist. She is lovely, but hasn’t a bit of a clue why Meghan’s pain persists – often through the Celebrex, and ALWAYS without it.

She prescribes the medicine. She examines her. She sees no signs of Juvenile Rheumatoid Arthritis.

We speak for a little bit about Cowden’s Syndrome, her thyroid, and some of the other battles she has endured. I ask the doctor if this could all be related.

And she, candidly, honestly replies, “I don’t know. I am starting to think there is some link, but I don’t know enough about your syndrome to put it together.”

Well at least she is honest. But it is tiresome. The traveling. The doctors. The lack of answers.

So tonight, as I gave Meghan Tylenol after swim practice because the knee pain wouldn’t cut her a break. We turned our thoughts to tomorrrow, and the 6th Annual World Rare Disease Day.

This year’s motto is “Rare Disorders without Borders.” It got Meghan and I to thinking about how nice it would be if doctors in all the countries would share their research. There are so many rare diseases throughout the world. So many more dire than our own. There are so few people even looking for cures. As she chats and gets to know a girl in Australia with Cowden’s, we can’t help but think about how much more voice each of our disorders would have “without borders.”

http://www.rarediseaseday.org/solidarity (This link takes you to a video on Rare Disease Day)

We talked a little about the newspaper article, and how it has helped spread awareness in out community. We talked about all the ribbons we have made and distributed, and how nice it will be to see them tomorrow, and know we are not alone. We have raised awareness of Rare Diseases, and we have only just begun.

http://www.silive.com/northshore/index.ssf/2013/02/staten_island_9-year-old_and_h.html (This is a link to our article from the SI Advance – February 20th)

Meghan, and her determination will see her dream of the “One of a kind” necklace with the Global Genes Project Logo, find its way into their new store. She will see more and more people recognizing that “Hope is in our Genes,” and the denim ribbon gives an identity to those who too often have none.

Tomorrow people will understand what it means to “Wear That You Care,” as they don their jeans locally and globally.

My daughter, one of the compassionate people I know, is also the least judgmental. She is kind. Because she knows what it means to need kindness. She is kind because she has faith, and wisdom gifted to her. She is kind because, “You can’t tell by looking at someone if they are sick or in pain.”

We share a genetic mutation. I am her mother. She is my role model and my hero.

She makes me a better person.

Wear your jeans – February 28th, 2013.

Meghan Speaks Out!

Published on February 25, 2013 by beatingcowdens8 Comments

Maybe tonight I would have to call Meghan the “Guest Blogger.”

What you read below is her speech. She was asked to prepare something to read for her school for “Rare Disease Day” on Thursday. She is an excellent public speaker, and fights only a few “butterflies” before she speaks. She always makes me so proud. I wish I could be there!

The text of the speech was written by her. I typed it, and then she went back in and changed it again. I added the pictures… just for here – because I like to!

She will review the speech with her principal tomorrow, but I don’t expect many changes.

When did my baby grow up?

**********************************************************************************************************

Some of you, who know me, know me as Meghan Ortega. Or, maybe you know me as Meghan from 4^th grade, or Meghan from Mrs. Worsdale’s and Mrs. LaMonaca’s class.

You might, if you know me a little better, know me as Meghan who loves to read, and swim. You might know me as Meghan who loves dogs.

Maybe you know that I have 2 dogs that I love, and a mom who is a teacher and a dad who is an electrician.

Lucky, Meghan and Allie - My three girls — Lucky, Meghan and Allie – My three girls

But, until today, very few of you knew that I am Meghan Ortega and I suffer with a Rare Disease called Cowden’s Syndrome.

Until September of 2011 I didn’t know I had this Rare Disease. What I did know was that something was wrong and my body was far from that of a “normal” kid.

For as long as I can remember, every week of my life has included AT LEAST one doctor’s appointment, and lots of times even more.

You’ve all been to the doctor and you know it’s not fun. It involves waiting and waiting…and even more waiting. It also involves poking and prodding. For me, it often means being sent to more and more and more doctors…

My mom says when I was a baby I wasn’t really comfortable, and I cried all the time. I almost never slept, and wouldn’t drink my bottle.

When we talk about it now, we think my body knew I couldn’t handle dairy products, and dairy is in milk.

Mom also tells me that I started seeing lots of doctors when I was just a few weeks old. Soon there were doctors to check almost every part of my body.

I have had 9 surgeries. I remember having my gall bladder out before I turned 4. I also had a lipoma (a soft tissue tumor that people with Cowden’s Syndrome get.)

I had knee surgery 4 times for an AVM in my right knee. An AVM is a vascular malformation. It is also common in Cowden’s Syndrome. It feels very strange because it pulses like your heart beat. Every time I had that surgery the doctor thought I wouldn’t need another one. But they have already done 4, and they are not sure if the AVM will ever go away, so I will probably need more.

Because I am in pain so much, I get physical therapy in and out of school. My outside physical therapist, Dr. Jill told Mom that she should take me to see a geneticist. I didn’t really understand what that was, but we went because that is just what I do.

Dr.Pappas at NYU was really nice. He examined me and he talked to me and mom. When he was done he drew some blood. He said he was pretty sure of what I had, but we had to wait for the test results.

In September of 2011, just as I was starting 3^rd grade, we went back to his office and he told us that I have Cowden’s Syndrome. It means that my PTEN gene is broken. Your body is made up of all sorts of genes, but these are G-E-N-E-S, not J-E-A-N-S like the ones you wear. PTEN is the gene that keeps your body from growing tumors. Because mine is broken I get more growths, like the AVM, the lipoma, and the nodules on my thyroid that I have to have checked every 6 months.

As soon as I was diagnosed, the doctor talked to my mom and said she probably had Cowden’s too. He took her blood and a few weeks later she tested positive.

Because of the Cowden’s my mom had lots of tests done, and it explained a lot of things about the 17 surgeries she has had. On March 5^th it will be a year since she had surgery for breast cancer. She is just fine. She says that knowing she had Cowden’s helped her find it early. She says to everyone that my diagnosis saved her life.

When I am here at school I smile a lot. I don’t like to dwell on anything bad. We spend enough time with doctors so I try to enjoy my time with kids.

You would probably never know by looking at me, that I am in pain a lot. I take medicine every day that helps my joints hurt less than they used to, but still most days I have pain. It is hard for me to climb up the stairs, and play at recess, but I do it.

We first heard about “World Rare Disease Day” last year, but at the time we were a little too stunned to do anything about it.

This year I told my mom I wanted to do something to make people more aware of Cowden’s Syndrome and all rare diseases. I was not ready yet to do a fund raiser – I just wanted to get the word out that Rare Diseases like ours exist. There are over 7,000 of them!

I shared my idea with Mrs. Manfredi and she said I could give out the ribbons and information you received today. I was really excited.

“Hope it’s in our genes” is the motto of the Global Genes Project. They try to raise awareness and find cures for all rare diseases.

Today I think it’s important for you to know you can’t ever really judge someone by how they look on the outside. You never know what’s going on inside of them.

Be kind.

Be aware.

Rare Diseases are everywhere.

Thank you

** By Meghan – Age 9!

This is the story… RARE DISEASE DAY!

Published on February 21, 2013 by beatingcowdens1 Comment

http://www.silive.com/northshore/index.ssf/2013/02/staten_island_9-year-old_and_h.html

Hopefully this link takes you to the full article.

Thanks everyone… and I mean all of you.

Lots of people were mentioned in here. In reality our support network is much larger and includes people we will never meet.

Love you all!

Lori

Newsworthy

Published on February 20, 2013February 20, 2013 by beatingcowdens2 Comments

In a nutshell that’s what it comes down to. Having HOPE. All the time. Even when it seems too hard.

My daughter Meghan gives me HOPE, and when she wanted to get prepared for “Rare Disease Day” on February 28th by creating lots and lots of denim ribbons… well, it was impossible to resist.

It started out for her school. Then it morphed into my school too. Plus about 500 more.

“To raise awareness Mommy.”

Meghan has had an affinity for the Global Genes Project since soon after our diagnosis.

As a matter of fact that is the very denim ribbon image she had our friend use when he crafted her “one of a kind” necklace. (Well, now that Mom has one I guess there are two…) That very same necklace she hopes will transform the world’s image of rare diseases and give them a uniting symbol.

A denim cause ribbon, crafted after the Global Genes Project's slogan, "Hope it's in our Genes!" — A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”

I called our local paper. The reporter met with us for 2 hours Friday of last week. The article printed today.

The link isn’t up yet – not the full one. Just the link for the photo.

So, for now… this is all I have.

We were on the front page of the "North Shore" section. — We were on the front page of the “North Shore” section.

And here is the article.It will probably read a lot better on an iphone… or with a magnifying glass. 🙂

I will be sure to post the real link when I have it.

But it is here and we are excited. Raising awareness in our hometown.

My girl already wants to add a few schools for next year… Can’t stop this kid, and I wouldn’t have it any other way.

Priceless!

Published on February 19, 2013February 19, 2013 by beatingcowdens4 Comments

Waking up before the rest of my family on a vacation day – 2 cups of caffeine.

Filling the car with gas- $50.

Traveling through the Brooklyn Battery Tunnel $13 roundtrip.

Parking for 4 hours – $25.

Two doctor Copays $20 each.

Trip across the Verazanno Bridge… about $6 with my EZpass.

But, the news from the dermatologist that I can stretch the visits a whole year, combined with the news from the breast surgeon that “everything looks great and I will see you in 6 months!”

ABSOLUTELY PRICELESS!

So we cross small hurdles gleefully.

We had 7 appointments carefully scheduled for this week to avoid time off from work/school. Three doctors apparently realized last week they have kids at home and cancelled. So this concise week of appointments will stretch a bit, but I have begun scheduling the 11 doctors and 4 scans I can remember that are due in June/July.

I will do everything in my power to consolidate them.

Cowden’s Syndrome WILL NOT run our lives.

We are actively preparing for RARE DISEASE DAY…. (FEBRUARY 28th – Get your denim ready!)

Until Friday when we see the vascular surgeon about that pesky AVM…

Listening while distracted

Published on February 17, 2013February 17, 2013 by beatingcowdens2 Comments

You know the rules and the laws on driving while distracted. Hands free cell phone devices, watch the road.. etc. etc.

But, what about listening while distracted?

The sermon in church focused on this last week, and honestly, 8 days later it is still on my mind. A personal challenge to me is to stop listening while distracted.

This is not an easy task. There are precious few people brave enough to venture inside my mind. It is quite a mess. Once you sort through all the noise, its hard to find focus.

The list of thoughts on any given day could include, but are not limited to…

What appointment to we have today? How many? What will the wait time be? When is the next one?

Will we get bad news, or just a 6 month return ticket?

How is Meghan feeling, what is her pain like?

Why does she hurt so badly, and how come no one can figure it out?

Will she feel well enough to participate in her after school activity?

How do we balance school with life? How do we get all the homework and projects done amidst her chronic health issues?

What about her IEP?

Do we keep the para next year? Do I need an advocate to help me? Have any of these people got any CLUE about Cowden’s?

What about the bills? I know we CAN pay them, but there are quite a few. How many phone calls do I need to make to be sure that they are all done right? When will I make the phone calls?

How much will the heat cost this cycle?

Will we need a new roof this year?

Did I update the EZPass account fo the new car after the accident?

What groceries do we need and WHEN do I have to go?

How are Grandma and Pop? Really?

Will the article for Rare Disease Day represent us? What about the ribbons? Will they be distributed properly? Will the kids – and adults benefit from it? What if Meghan has to speak at her school? Will she know what to say?

Why is there so much homeowork all the time?

How am I going to finish this math series with her while studying for Social Studies?

Does any of that TRULY matter for 6th grade, or will they just realize I have a pretty smart kid?

When is the FUN supposed to start?

…. AND I COULD GO ON AND ON AND ON AND ON…

So, with that many thoughts running through my head (and sometimes more,) how can I ever be an active listener to ANYONE?

Meghan and I are best buddies. She is a great kid. But we do butt heads sometimes.

I have to wonder if its because inside that 75 pound 4 foot 10 body, she also is listening while distracted.

Tonight we will stop.

We will focus.

We will look at each other.

We will listen carefully.

Maybe we will actually hear each other if we eliminate some distractions.

Her father is very good at clearing his mind – eliminating distractions. Meghan and I – not so much.

But how can I hear what anyone is saying if I don’t LISTEN?

I see it all the time in this technology age. Parents on cell phones, ignoring their kids. Kids pleading for attention, and to be heard.

I am no better if I let the distractions of my mind get in the way of my conversations with my family.

When I ask God to listen, He does. When I listen carefully, He speaks. This I know.

Life is way too short to miss out on what is right in front of me.

I am working on clearing my head and avoiding “Listening while distracted.”

Published on January 31, 2013January 31, 2013 by beatingcowdens4 Comments

So tonight, as I turned the calendar to February, Meghan actually whooped with excitement.

When I asked her why, she told me that she was going to “Celebrate Rare Disease Day” this month.

I smiled in spite of myself. This kid can get excited about anything, and to imagine that 2 years ago we never even knew there was a “Rare Disease Day.”

This year she intends to celebrate with her usual charm and zest.

Our kitchen table is a ribbon making center. We are gluing denim ribbons at an alarming rate. She created a half sheet to attach to each ribbon, describing our connection.

Then, she bravely approached her school principal to get permission to distribute 950 ribbons to the staff and students at her school. She will ask them all to wear jeans on February 28th. And that day, she will not feel alone.

She is getting to know some of the other rare diseases, listed here.

http://www.rarediseases.org/rare-disease-information/rare-diseases

She knows ours is pretty rare, but the list is alarming. Almost 7,000 diseases fit the criteria for “Rare Disease.”

http://curiosity.discovery.com/question/criteria-to-determine-rare-disease

So tonight, after we left the dentist, with the encouraging news that she doesn’t think we need an oral surgeon. We were in a pretty good mood. Meghan and I looked in the mirror at the “cobblestone gums” (a hallmark of our Cowden’s Syndrome) that we share. Mouth issues are just another battle to be fought in the war.

Rare Disease Day gives her a focus.

The pain has been horrendous this week. The legs, the knee, the groin, the arms. Probably the weather – everyone says. Little solace to my 9 year old. The Celebrex seems to be quitting. Supplemented each morning by a dose of tylenol, she gets through the day.

But she lights up again when the talk returns to “Rare Disease Day.” She has hopes that maybe her young friend in Australia, or in Ohio – both with Cowden’s, might be able to Skype into her school.

She and I have matching shirts from with the Global Genes logo.

She wants to give these ribbons to anyone who will take them. She wants the world to know, and to understand. Even if it is only for a day.

She wants her pain, her doctor’s appointments, her worry, her biopsies, her surgeries… to matter.

She knows they do. To the people who love her. She knows there is a virtual army following her in prayer every step of the way. She knows they are praying for the “retinologist” visit, and for her eyesight, as well as for her health.

She knows that some of them she knows, and some she will never meet. She appreciates every single one.

And this is the month. She will have “her” day. She will include everyone. She will not feel like 1 in 200,000. She will not be lonely.

She hurt tonight. We rubbed her legs, and kissed her before bed. We have no idea if it will ever be alright So we don’t lie anymore. We do what we can, when we can.

I will contact the local papers, and see if I can get someone to pick up a story on a little girl who wants to change the world.

I will eagerly await a phone call from the Global Genes Project.

You will hear a lot about this during the month. Bear with us. We are not passive people. We work through doing!

My Little Ambassador

Published on January 17, 2013January 17, 2013 by beatingcowdens15 Comments

Meghan is really into raising awareness of Cowden’s Syndrome and other Rare and Genetic Diseases. She is extremely excited about “World Rare Disease Day” on February 28th.

We are in the process of making MANY denim ribbons that look like this. She plans to ask her principal tomorrow if she can give one to every staff member and student in the school. She wants to do this purely to raise awareness. Her ideas for fundraisers are developing separately.

She has also researched statistics on Rare Diseases, and came up with this sheet to attach to the ribbons.

February 28^th is World Rare Disease Day

My name is Meghan… and I have a Rare Disease called Cowden’s Syndrome. It is a genetic disease that affects only about 1 in 200,000 people. (That is only about 1,500 in the whole USA!) One of my genes called PTEN is broken. It causes tumors and vascular growths in my body. I have lots of surgeries. My Mom has Cowden’s too. We are luckier than a lot of other people with rare diseases.

I learned some information about other rare and genetic diseases;

1. There are about 7,000 types of rare diseases.

2. Some of the rare diseases affect less than 100 people.

3. 50% of all rare diseases affect children, and are responsible for 35% of the deaths in the first year of life.

4. 1 in 10 Americans are living with a rare disease.

5 About 350 million people in the world are affected by rare diseases.

6. If all the people with rare diseases lived in one country, it would have the 3^rd biggest population in the world.

7. 80% of rare diseases are genetic. They can present at any time in a person’s life. My mom was much older than me when she was diagnosed. I was diagnosed first!

8. There are no cures for any rare disease, and only 5% of them have any treatment.

9. Over 50% of all rare diseases have no foundations, support groups, or anyone looking for a cure.

10. Cowden’s Syndrome isn’t fun, but when it comes to rare diseases, we are some of the lucky ones.

We support, and get our information from www.globalgenes.org. Their slogan is “Hope it’s in our Genes.”

That “play on words” is why we wear denim, and denim ribbons today.

In addition, because maybe there was a chance I couldn’t get any more proud, she received a book assignment from school. She had to write a story where the main characters were two dogs named “Casey and Bella.” She decided to write about what meant something to her.

I have no idea who will win, but you know who gets my vote.

Everywhere she goes, she seems to take an opportunity to tell someone about Cowden’s Syndrome. She says people need to know. She uses our necklaces to start all sorts of conversations.

She dreams that one day they will be as common as the “pink ribbon,” or the “puzzle piece.”

I think she is just the girl to make it happen.

Someone in one of my online groups asked if we knew anyone famous with Cowden’s Syndrome.

Does… I know someone trying to make Cowden’s Syndrome famous count?

I love my little girl!

Perspective… with a touch of fatigue and frustration

Published on December 20, 2012December 20, 2012 by beatingcowdens2 Comments

I have said so many times, and through the last year especially, that it’s all about perspective. That is how I get by, and that is how I teach my daughter. The key is having enough perspective in life to understand that in EVERY house, in EVERY street, in EVERY city, in EVERY country, people have “stuff.”

Now its easy to look sometimes and think that “this isn’t fair” or “they have it easy,” but in reality – we just don’t know. We aren’t them. So we live our lives, trying to avoid passing any judgements – and doing our best to get by.

We are acutely aware, especially in these days after the tragedy at Sandy Hook Elementary School, and “SuperStorm Sandy” that tore through our hometown, of how lucky we are,

And yet, even with all that perspective. Sometimes it’s just hard. Sometimes its hard to get up and get going, and press on. Sometimes its hard to deal with the punches life keeps throwing. Sometimes I need to stop and take a breath to avoid the chest pain of my own anxiety. Sometimes that’s just how it is.

So, I remain torn. Torn between the conscious knowledge that so many others are suffering in ways far worse than I could imagine, and this ever-present, sometimes bone crushing fatigue that plagues me as we just try to get by.

If you are still reading then. you will indulge me a few minutes of frustration along the “Cowden’s Syndrome” journey? That is, after all, what brought me here to being with.

Sometimes when life gets as overwhelming as it has been I start to practice avoidance. I duck phone calls and messages. Not because I don’t want people. It’s actually quite the opposite. Its because I fear people will tire of hearing the same old thing. And, really, no one knows what to say. So even if I am comfortable enough to lay it out there, I feel bad for the poor soul now left without a clue as to how to reply.

Three months ago Meghan‘s pediatrician asked me to find her a neurologist to contend with her headaches I am thinking she more likely needs an ENT for her sinuses, but I haven’t found either one. The week of “Sandy” her eye doctor appointment was cancelled. Haven’t rescheduled that one either. Tonight she lays in bed resting her fatigued hypermobile joints. I wonder if she gets that most kids don’t have to spend the night in pain just because they danced in school a bit today.

Last December – this exact week, I was very busy getting the slides from Meghan’s November thyroid biopsy transferred to a prominent cancer hospital for a second look. It took phone call after phone call, but finally they were received by the endocrinologist/oncologist. Just in time for a holiday break. We waited anxiously for confirmation that the biopsy was read correctly and was indeed benign. We were called in for a meeting with the doctor a few days after New Years. The news was better than we had expected. “Precancerous cells.” Come back in 6 months. And so we did. The scan in June got us the same – return in six months. On December 27th we will head back to see if those cells are still “precancerous.” I am fairly sure I am the only one who remembers the timing of last year’s anxiety. That is why I find this year’s timing ironic as well.

So, the car is totaled and gone a few weeks now. The back is improving – often, but not always. The sonogram revealed disconcerting growth with the spleen hamartomas. I trudged through another MRI. I was told to call a surgeon. They requested the CD from the local sonogram. I sent it Fed Ex. It arrived last Thursday.. I called Thursday last week to confirm its arrival. Then I called Tuesday to find out what was the progress. I was told the oncologist and the surgeon had to view it then talk. I think I annoyed the receptionist when I asked if it would be after Christmas. She said no. It would be sooner. So, I have carried my phone like a schoolgirl with a crush. Nope. Tomorrow is Friday. I can almost wager they are away, or on vacation. I just want to know if I am planning for surgery on my spleen. That’s all. Am I planning for surgery? I can wait on the specifics.

But,maybe I can’t wait that long. I guess that all depends on Meghan’s thyroid. If that stays in, then I can pull this off. One more surgery – no big deal. But if she needs surgery too… then things get trickier.

I am NOT looking for a formal plan here. I know how God feels about that. Just some guidance… maybe?

I was back at the hospital that did my hysterectomy tonight for my six month follow-up. Everything looks good. Apparently the hot flashes are right on schedule, and hormonal migranes get me a script for medication. I will see them again in the summer so we can talk about adding bone density test to my list of life long follow-up stuff. It’s all good. I got this.

I think.

Yesterday was “cause day” at our school. I wore Meghan’s necklace and her shirt. I was able to raise a bit of awareness. We have 300 yards of denim ribbon. We are going to do something special for rare disease day in February.

We are special. We are 1 in 200.000. There are 2 of us. And I am tired.

But, I haven’t lost my perspective. We are so blessed.

It’s not all about us

Published on October 15, 2012October 15, 2012 by beatingcowdens3 Comments

And this is how the day started. With thoughts of Friday. Never a good way to start the week. I am not one to try to wish my life away, but is it so wrong if I prefer days with my family over anything else in the world?

But, we got it together and got out of the house on time.

Waiting for Meghan to get on the bus, a car doing about 65 speeds down our street. As I refrain from the words I want to yell, I quickly say a prayer to myself – that his stupidity and selfishness doesn’t bring harm to anyone else. I am always appalled – and I don’t care how late you are – by the callous disregard for human life it takes to speed past a school bus. UGH!

Pretty much that sums up how the day continued. There is a sense of urgency in everyone it seems – except about what really matters.

Now I don’t claim to have it all together all the time. And I don’t claim to be free of frustration. Nor do I deny that the ,”Why Me?” bug does bite us all here sometimes.

But, I am still amazed by people who are so narrow-minded that they can’t see the world from someone else’s point of view. I am still deeply troubled by people who won’t take a minute to try to put themself in someone else’s shoes. And I am horrified by those so self – absorbed that they speed past school buses, and generally have little regard for human life.

Maybe that’s it. Maybe I feel like too many people don’t realize how precious life is.

I don’t mean it as a morbid thought – but it really is true. I look at my grandparents, still married – 67 years later at 92 and 93, and they always kiss each other goodbye when they go out. I would hope they will be with us forever, but reality is what reality is, and they take a moment to express their love – often. So many people could learn life lessons from my grandparents. They are role models to be emulated in so many ways.

_DSC0072 — Ist Holy Communion 2011, with GiGi and Pop

It shouldn’t take a rare disease. Cowden’s Syndrome or any other are not prerequisites for compassion. You shouldn’t need to have cancer, or multiple surgeries, or scary benign tumors, or to live in fear of any of the above, before you realize the value of life.

We are in a waiting period here. No major new doctor news. The headaches Meghan was suffering with have subsided, but I still need to get a neurology consult together for her. The joint pain is returning, slowly, one spot at a time. It is manageable still, but the requests for supplemental pain medicine are starting to take place at least 3 times a week. Hoping that the 100mg of Celebrex will be enough to keep her comfortable, maybe until they find the reason for her pain. We go to the eye doctor in 2 weeks. The cardiologist is the beginning of December. He will hopefully tell us that the one too many prescriptions required to keep my little love functional are not harming her heart. Then – on the 27th of December – its on to the endocrinologist to check those thyroid nodules. That same week we will sneak in an MRI of my spleen (which, I am still KEEPING btw..) But, for now we are in a holding pattern and it is a good place to be.

Of course, being in a holding pattern gives my girl time to think. While we wait word on the necklace from the Global Genes Project,

she is already planning our next fund-raising adventure. I am currently on the hunt for denim ribbon so she can outfiit her school in denim ribbons for “Rare Disease Day,” February 28th. And, with a few whispers in her ear from a special third grade teacher, she has begun to ask if we can “pull off a 5k run” for the Global Genes Project.

So, I put a few feelers out. We will keep you posted.

I will be practicing looking at the world through the bright eyes of my child. She sees a lull in doctors as an opportunity to spend time helping others. There has to be a bunch of lessons there.

Take a minute to breathe. Time passes so quickly. Hug a loved one. Look at the world through someone else’s eyes.

I have always known these things on some level – but Cowden’s Syndrome has brought them to the forefront of who I am.