“I hope you never lose your sense of wonder…”

Meghan left tonight for the Father Daughter Dance with her Dad.  I am always so grateful for him, but especially on nights like tonight when he can show her the time of her life.  She needs that time – to be happy and carefree.  She needs time to just be a kid.

Father Daughter Dance November 2009
Father Daughter Dance November 2009

I looked back on some old photos from dances in years past.  I know it sounds cliche, but I can not believe where the time has gone.  It stung especially I think this weekend, as my girl lost her last baby tooth, and came to the realization that Santa, and the tooth fairy, and all that magical mystery of childhood isn’t “real” in the way she had thought.

Father Daughter Dance November 2010
Father Daughter Dance November 2010

I think she took it better than me.

I cried a lot this weekend.

I think I am angry too if I am honest.  I think I am not just sad, but angry.

And that’s ok.  I have to let myself feel even the ugly emotions when they are in there.

I am angry about Cowden’s Syndrome.   I am angry about the cloud it carries, even on the sunny days.  We always seem to need to pack an umbrella in some game of anticipation – not designed to be won, just played.  Forever.

I have said before, and I will say again – if it was just me…

Father Daughter Dance November 201
Father Daughter Dance November 2011

But it’s not.  It’s her too.  That is reality, and it really does torture me sometimes.

All parents feel pangs of sadness as their children grow.  And, Meghan being my one and only, I am sure the pangs sting extra hard.  But, there is more than that.  We deal with something most parents don’t.

As her age increases the looming cancer threats that Cowden’s carries with it increase as well.  At her age, the biggest threat is thyroid cancer, and we are battling the beast head on.  We have dealt with, and continue to fight with the AVM in her knee, and we have gotten past the lipoma in her back.  All  thanks to Cowden’s Syndrome.

But, as she grows and matures, so does her body, and with it her wisdom.

She looks quizzically at my silicone breasts and her own developing ones.  She wonders.  Sometimes to herself.  Sometimes aloud.  When will it be my turn?

She asks if she will be able to have children, or if she will need to have her uterus out first.  She asks that if she does have children… do they have to have a PTEN mutation?  Do they have to have Cowden’s Syndrome?

Too many questions to flood the mind of my 4 foot 11 9 year old.  Too many questions for the string bean with the developing body.  Too many worries for my baby girl.

I am angry.  But thankfully she is not.  She takes each day as it comes.  She accepts the eventuality that one day the biopsy will not be negative.

Father Daughter Dance January 2013
Father Daughter Dance January 2013

I sheltered her for a long time, but they made me lay it on the line this year.  So we had the “cancer” talk in the waiting room of Memorial Sloan Kettering last month.  I told her there was no guarantee she would get cancer.  So she spun the question and asked me how many people with Cowden’s I interact with have NOT had cancer.  The number is small.

So we talked about the benefit we have that others don’t.  We talked about how constant screening means we will beat whatever beast tried to get at us.  We will be vigilant.

dance in the rain

We will win.

I get angry sometimes.  She just finds other ways to make me smile.  She keeps my heart soft.  She is my rock.  Wise beyond her years, and still a kid at heart.

I hope you and Daddy dance your hearts out tonight!

Are you Santa?

I can not take credit for the content of this letter.  I found it on the internet, but it met my needs, as the questions started coming fast and furious.  How can Santa…?  How big is the tooth fairy…?  All ways for her to let me know she “knew” and was ready for me to tell her.  I on the other hand was not ready at all.

January, 2013

Dear Meghan,

You asked a very good question: “Are you and Dad Santa?”

I know you’ve wanted the answer to this question for a long time, and I’ve had to give it careful thought to know just what to say.

The answer is no. We are not Santa. There is no one Santa.

I am the person who fills your stockings with presents, though. I also choose and wrap the presents under the tree, the same way my mom did for me, and the same way her mom did for her. (And yes, Daddy helps, too.)

I imagine you will someday do this for your children, and I know you will love seeing them run down the stairs on Christmas morning. You will love seeing them sit under the tree, their small faces lit with Christmas lights.

This won’t make you Santa, though.

Santa is bigger than any person, and his work has gone on longer than any of us have lived. What he does is simple, but it is powerful. He teaches children how to have belief in something they can’t see or touch.

It’s a big job, and it’s an important one. Throughout your life, you will need this capacity to believe: in yourself, in your friends, in your talents and in your family. You’ll also need to believe in things you can’t measure or even hold in your hand. Here, I am talking about love, that great power that will light your life from the inside out, even during its darkest, coldest moments.

Santa is a teacher, and I have been his student, and now you know the secret of how he gets down all those chimneys on Christmas Eve: he has help from all the people whose hearts he’s filled with joy.

With full hearts, people like Daddy and me take our turns helping Santa do a job that would otherwise be impossible.

So, no. I am not Santa. Santa is love and magic and hope and happiness. I’m on his team, and now you are, too.

I love you and I always will.

Mommy

I cried for at least an hour.  She handled it with her normal grace and poise.

I hope she never loses her sense of wonder.  Sometimes I wonder how broad the shoulders of a 9 year old should have to be.  I know they all have to find out some time, but life is tough enough, escpecially when chronic illness fills your days.  They should stay young as long as possible.

 She already has plans to fill my stocking next year.  She said I shouldn’t have to do my own – lol.  ❤

And… Just in case I was worried – she said, “Don’t worry Mom, Disney is still the happiest place on earth!”

My Little Ambassador

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.

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

February 28th 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 3rd 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.

lori and meghan

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.

Cover
Cover
Back cover
Back cover

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.

Two of a kind
Two of a kind

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!

BENIGN!!!

I headed home at lunch with the need to send out this message of thanks, to those of you who thought about us, prayed for us, and kept us close to your hearts.

I spoke to the nurse this morning.  She said the pathology was BENIGN!  I don’t think I heard much else she said, as the tears just started flowing.

We are not, nor will we ever be “out of the woods.’  They will scan her thyroid every six months indefinitely.  But I am learning with Cowden’s Syndrome to accept the “6 month leash” as a win.

Right now she does NOT have thyroid cancer.

Right now she does NOT need the thyroid removed.

Although the MOM in me in some ways wants it gone BEFORE they ever tell me its malignant, I do understand the doctors reasons for waiting.

So, with a renewed appreciation for the power of prayer, and a belief that we have MANY guardian angels watching over us… I say THANK YOU ALL.

Two of a Kind

The upside of waiting I guess, is that it gives me a bit of time.  Since I can’t concentrate, I multitask.  Simultaneously taking down the Christmas decorations, while doing laundry and eating chocolate chip cookies with white wine.  Seems like a perfect time to stop and blog.

1337577_wine_swirl

A few months back I posted about Meghan‘s necklace.  The one that we had had created, just for her, inspired by the Global Genes Project logo of the denim jeans.  She received it in August and was so thrilled.  She wears it proudly and looks at it as a platform to explain to people what it stands for.

Meg necklace

Her goal in having it created was to ultimately have the Global Genes Project sell them as a fund raiser.  She has this hope that her idea will ultimately raise money for rare and genetic disorders.  I think she is right, and eventually they will get to selling it.  Although the holidays are a crazy time and a lot of major things have been going on at the Global Genes Project.  They are a super organization.  Working to the benefit of all of us who are affected by rare genetic disorders – in our case, Cowden’s Syndrome.

This fall she had my friend’s husband – who created the piece, engrave hers.  It says “August 2012 – First of its kind.”  How appropriate.  I am quite sure my girl is the “first of her kind” as well.

Because, she decided she wanted me to have one too.  A necklace like hers.

necklace 1

“After all Mom, you didn’t just have breast cancer.  Cowden’s Syndrome is what we will both have – forever.”

She’s right.  As I gulp the last of my wine.  We are at this forever.  Together.  And as much as it flat out stinks, I wouldn’t want to share forever with anyone else.  She is one awesome little girl.  Each of us 1 in 200,000.  Lucky enough to have each other.

Two of a kind
Two of a kind

 

 

 

 

What a Day!

I am getting a bit fatigued by all the positive stories I tell myself.  All the ones where everything works out just fine, and we get a bit of a break from doctors and surgery and chaos and worry.

I think I am getting tired of them, because I am starting to doubt if they are true.

The waiting room in the pediatrics department.
The waiting room in the pediatrics department.

We began the day at radiology at MSKCC in NYC.  The thyroid sonogram took longer than it should have.  I knew that.  I also knew when the doctor of radiology asked to speak to me alone that the news wasn’t great.

The nodule they were concerned about in June still has them worried.  Despite there being MANY other thyroid nodules, this is the one that is of concern.  I have every reason to believe it is the same nodule that caused concern when we had the horrendous biopsy at the other hospital a year ago.  The doctor told me right there it had to be biopsied.  She didn’t even wait for us to see Dr. S.  (See the appointments are set up so you go to radiology an hour and a half before you go to the doctor.  Then the doctor usually reports on the findings.)  I knew this was out of order, and it spoke to the seriousness of it all.

I explained that Meghan‘s biopsy last November was the most traumatizing experience of our medical lives together.  We have been through a lot, but watching that radiologist YELL at her to be quiet, and then BURN her neck with the numbing spray… well it was too much for any of us.  She will need to be sedated I said.

We went upstairs for our appointment with Dr. S.  Before that Meghan met with one of the Child Life Specialists, and gave over 2 shopping bags full of toys.  The woman was in awe, and I was just so proud.

We checked in for our visit with Dr. S. and we waited.  While we waited I spoke.  Candidly.  I had to be the one to tell her they were looking for cancer.  I had to tell her they were going to biopsy again.  I had to tell her I was TRYING to get her sedation, but I couldn’t promise.  She swallowed.  She stared at me.  She took it all in.  Then she reminded me I should try REALLY hard for sedation with the biopsy.

We saw Dr. S.  No new information, except that she grew a few inches and lost a few pounds since June.  HE said she is OK right now, but he doesn’t want to see her lose any more.  I chuckled at the school notices I always get home calling her obese.  Dr. S.  reexplained what I had heard in radiology.  He reassured us that  even if the nodule is malignant it is small, and not likely to need more than a thyroid removal.  Some comfort… but not a ton, for my girl still growing.  We were advised to take the first available biopsy appointment.  And we will.  I should know in a day or so when that will be.

american girl

Once we checked out it was on to the American Girl Store.  WHAT A CROWD!  Not being crowd people, either of us, we navigated the store and Meghan picked up some essentials – like a backpack and an allergy safe lunch for her new doll.  The doll got her ears pierced, and we were out the door.

Daddy at work.
Daddy at work.

We headed up to see Daddy at work.  We got a close look at the New Year’s Eve ball, and the view never gets old, no matter how many times we see it.  Meghan LOVES seeing Daddy at work!

Family shot in front of the New Year's Eve Ball.
Family shot in front of the New Year’s Eve Ball.

45 minuted to get the car out of a midtown lot.  We arrived home to 2 dogs that just weren’t able to wait until we got home.  Upstairs floor cleaned.  Two glasses of wine gone.  Some type of leftovers for dinner.  And tomorrow we get to wait by the phone again.

Good thing we are always ready for a fight!
Good thing we are always ready for a fight!

Maybe in January the Ortegas should resolve to lose a thyroid and a spleen?  One each?  Really???

Tonight Cowden’s Syndrome, I will thank you for my gray hair, loss of appetite and generalized anxiety.  Cut us a break… please?

Nerves of Steel

I mean no disrespect to the “Man of Steel,” but I think parents of kids with chronic illnesses have it more difficult.

Man-Of-Steel-man-of-steel-32092248-1024-768

We need “Nerves of Steel.”

NervesOfSteel_DOS_title

I am trying to settle in to bed.  Tomorrow bright and early we head out for the thyroid sonogram and appointment.  My stomach is twisted in a million directions.

At this point I should be calmer.  I should relax, and have faith – as I am sure that everything will somehow be alright.  Yet, still, it is so hard to keep your mind from wandering.

chronic illness

I will take it all, every illness, every horrible twist and turn that this wretched Cowden’s Syndrome will toss at me.  Just PLEASE… leave my kid out of it.

Today we stayed home.  The three of us, (and Allie and Lucky) as a family.  We did some work, and we rested.  We also did a little bit of shopping.

My girl had only three things on her list for Santa.  She asked for an American Girl Doll, a dog ring, and money to buy toys for the children in the hospital.  Santa left her $100.  Today she carefully selected some toys, “a kid stuck in a hospital might appreciate.”  And she would know.  She has spent her share of time stuck in a hospital.

These are the toys she picked out for the kids in the hospital.
These are the toys she picked out for the kids in the hospital.

Such a great kid.  I am just so proud of her compassion.  We are blessed.  Please, dear God… hold us close tomorrow.

My three girls... resting together.
My three girls… resting together.

 

I Can’t Fix It

I can’t fix it.

It’s not a scraped knee, or a ripped pair of pants

It’s not as easy as baking a special treat, or giving some extra hugs. 

I can’t fix it.  And it’s going to be here forever.

A little over a year ago we knew nothing of Cowden’s Syndrome.  We knew we had a smart, funny little girl with lots of medical issues.  We knew we were stumping the best of the best doctors.  We knew we were getting by.

And then they figured it out.  And the world started spinning out of control.  Just over a year ago, I got my diagnosis too.

Surgeries, cancer, pain, scans, bloodwork, appointments, bills, headaches, heartaches, illness, missed events, fatigue.

I can’t fix it.

“Love You Forever” is one of my all time favorite stories.

I guess it hit me hardest today.  I never know when reality is going to come at me like a two by four.  But, today it did a number on me.

We went to the orthodontist for her monthly visit.  It has been just over 4 weeks since the braces went on.  She has been a trooper.  Mature as anything.  Careful.  Diligent.  Typical Meghan.  And yet, the gums are starting to overtake the braces.  It’s almost unreal to watch.  We brush – often together.  With an expensive fancy toothbrush.  I help her floss, and still they grow.

We were both a little worried that the orthodontist would yell at her.  Reprimand her for poor hygiene.  But, he was great.  I can’t say he understands “Cowden’s Syndrome” and its overgrowth issues, but he did understand Meghan.   We have been with the office 2 years, and he knows her gums are “extremely reactive.”  So he gave me more tips to help her brush, and suggested another ridiculously expensive air flosser.

But, during the course of the conversation he did say, if they keep growing and overtake the brackets he will have to remove the brackets, have an oral surgeon push back the gums, and then reapply the brackets.

Well, my little 9-year-old who is just about finished with Tolkien‘s “The Lord of the Rings,” had NO problem at all with the context clues on that one.

Several years ago, before we knew it to be a typical “Cowden’s ” growth, Meghan had a large mass removed from the gum over her front tooth.  I will never forget it.  They kept her awake.  Gave her (not nearly enough) Valium, and I had to hold her as they burned it off. 

Apparently I am not the only one who will never forget it.  She was beside herself when we left the office, and remained on edge all night.  She kept reminding me how bad it hurt for one tooth, and how she does NOT want to deal with it for 6.

I can’t say as I blame her, but with little else to say, I simply said,”I’m sorry.”  To which she, in her most grown up voice said, “I know you are, and it’s not your fault.  But you can’t fix it.  You can’t fix me.  No one can.”

At that point trying to reassure her that she wasn’t broken would have been pointless.

I let her go.  She played on her Ipad, finished most of her weekend homework, and watched a movie with Dad.

He shoulders seemed a little heavier.  More of the weight of the world on my baby.  I can’t fix it.  I can’t do anything to stop the firestorm that will come our way in the next decades.  I can only be vigilant.  And hold her hand.  And love her. 

 Oh, how I love her.

Just Another Day “Off”

 We had a day off today, so if you play this game often, you can guess that we spent it – at a doctor!  Because, that my friends, is how we roll.  Except today wasn’t a high-tech specialist or a visit to Manhattan for testing.  Today was kind of ordinary.  Today we were at the orthodontist.

Now, I have made no move to hide my concerns about Meghan‘s accelerated development, but since I have come to the conclusion that I am the only one at all concerned, I am trying to just move along with it as it comes.

We have been with the orthodontist since she was 7.  At the urging of our kindhearted dentist, I was nudged, gently at first, and then… well, it was time to take her to be evaluated.  At 7 she had a rake put in her mouth.  A fixed appliance, similar in concept to a palate expander, but different.  A rake is there to break the tongue thrusting habit.  She wore that fixed appliance for a year, and a removable nighttime retainer for another year.  All the while the progress her teeth and her smile made were remarkable.

So, last month when we were at a routine check up the orthodontist told me to schedule an appointment to have her braces put in.  I asked when, and was told, “soon.”  It was shown to me all the progress that had been made, visible in the computer Xrays, and explained that if we put them on now her wear time SHOULD be 18-24 months. 

Quickly doing the math I asked, “She could have them off before Junior High?”  Thinking in my head how fabulous it would be to have one less worry during the three most awkward years of your life.

He looked at me a bit stunned and asked, “How old is she?”

“She just turned 9.”

He looked at the XRays again.  I asked him if she was too young.  He told me her chronological age really had nothing to do with things.  Her dental age makes the decisions.  Her mouth is ready he told me.

So, we made the appointment and then sat in the car for a long time.  She asked me question after question.  She was curious about my braces, and her Dad’s experience as well.  She wanted to know why I thought it was so good to have them off before 6th grade.  She told me she was scared,  which I said was normal.  She asked me why everything was happening at once.  Why was her body growing so much, why is she ready for braces, why can’t she just take a rest?  She understands really, she always does.  But sometimes she needs the pep talk that we have to press on.  She came around and I turned the car back on, prepared to enjoy one last afternoon in August before school began.

“One more thing Mom.”

I stopped and turned around to look at her.

“Don’t tell anyone at all.  Don’t blog about it.  Don’t tell your friends.  Don’t tell anyone.  I want it to be a surprise.”

She might have just as easily broken my fingers, and barbed wired my mouth shut.  But she was clear.  This was HER secret – not to be released without her permission.  And while I may have flubbed once or twice along the way, on the whole I did a darned good job.

She taught me (another) lesson that day.  When I share my life here, I am also sharing hers.  And she wants, and deserves a say.  We have talked a lot since then about whet I can and can not write about.  She puts very few restrictions on me, and I appreciate that – but I respect each one.  This life is hers too.  And, in the middle of teaching her about the permanence of the internet, I have to respect that on some things she will want privacy.

So, I write about Cowden’s Syndrome, about thyroid nodules, and AVMS.  I write about breast cancer and my mastectomy and hysterectomy.  I write about her worries about cancer.  I write about her desire to fit in, to have fewer appointments, and to feel a bit more normal.  I write about the countless hours we spend waiting, and the doctors who often don’t help much anyway.

I write about her desire to change the world – her fundraising ideas, and what a generally awesome mature, and compassionate kid she is.

And then, I let her read.  If it bothers her.  It comes out.  Its only fair.

But, I tell her, there are sacrifices, some small sacrifices of privacy that have to come when you want to raise awareness.  She gets it.  She always does.

So today, after the braces were on, and literally not less than 25 minutes later – before a drink of water – one of the brackets was off. (The cement must not have adhered.)  There were some tears then.  Some frustration about  wasting the WHOLE day at the doctor AGAIN… even if it is for “normal” stuff – none of her friends have to have braces this young….

And there was the life lesson for today.  For both of us.  We stayed calm.  We had another long talk about how “everyone has something” even though it seems she has an awful lot.  We talked about her friend’s older sister, and the new back brace that she is wearing, the apparent culmination of a long list of medical issues that have plagued her.  That young lady never seems to complain either.  Maybe that’s why Meghan respects her, and is drawn to her.  Kindred spirits?  We know quite a few.

We got the bracket fixed.  We headed to Party City.  We got a bargain on matching Halloween costumes.  We went to Kohl’s and she got a stunning dress for the Father Daughter Dance in November.  Slowly, the smile crept out.

We brushed the teeth for a long time tonight, getting used to the awkward new additions in her mouth.  Soon they will become  natural, like all the other bridges she has come to and crossed in these nine years.

Maybe the Cowden’s has nothing to do with the braces, or the need for having them so early, but I think it has helped make us even stronger, tougher, more durable.

She is sleeping peacefully, all content pre approved. 🙂

Another day off, another mission accomplished.  One day I would just like the mission to be a day in our PJs!

Award winning smile – even before the braces!

The New Normal

Ok. So that normal was short-lived.  Glad I enjoyed it while it lasted.

I am trying the “don’t worry” thing.  I really am.  Truth be told.  I stink at it.  It’s true.  I try and try, but in the end – epic fail.

We finished the antibiotics Tuesday from the hospital/fever/headache thing 2 weeks ago.  She was on the mend, so I thought.

I know our schedule has been busy.  Too busy for her.  Too many things to do, every day leads to exhaustion.  My body struggles with exhaustion, but hers just can’t cope.

So this morning we went for the follow-up blood work.  The one to make sure the White Blood Cells and platelets came back to normal.  The we headed to Queens to visit my in-laws.  Two dogs, Meghan, Felix and I.

I the middle of a nice visit I noticed her resting her head on the arm of the chair.  Then, she asked for food.  She told me she wasn’t feeling too good so she must be hungry.  We fed her.  Then it all started to crash and burn.

She loves her baby cousin Connor.  But, she started backing away, not wanting to get too close to him.  Then, there was the red line across the eye.  Finally, “Daddy will you rub my head?”

And from there it all went downhill.  A cold cloth and Daddy’s magic fingers did little to relieve the pain.  In about 15 minutes time we were back on the Belt Parkway heading home.

My mind was racing.  She slept for a bit in the car, and I just kept trying to figure out a way that this could make sense.  Not even just to me, but to someone – anyone.

The last time we were in for headaches the pediatrician told me to get a neurologist consult.  Well I am working on it tonight.  God and the power of the internet have me linked up with some Cowden’s patents.  The goal is to find a pediatric neurologist who is competent and already has heard of Cowden’s.

That is of course if the immune system stuff is even Cowden’s related.  Then again at this point I am going under the theory that all this is related in some way.

Settled into bed with Advil and a 102 fever at 7pm. It promises to be a long night.  I will decide on a neurologist and have a few numbers ready to call during my lunch on Monday.  Priority.

We will see the ped at 3:30 Monday, and hopefully not  before.

Worry -it’s what’s for dinner.

Maybe I should stop looking for the old normal.  It happens so infrequently anyway.  Maybe it is all about the new normal.