One of a kind…

It probably started in the spring.  Meghan’s class had been working on a fundraiser for Alex’s Lemonade Stand. (alexslemonade.org)  The entire third grade was raising money for childhood cancer, and she took her fundraising work very seriously.

Meghan decided to make a bookmark, with a picture of my cousin Meghan – Angel Meghan as we speak of her – who died from Leukemia in 1991.  She wanted to make her connection to the fundraising personal.  As we prepared baskets of bookmarks to leave with people we knew, Meghan decided we should sell ribbons too.

So, I asked her what color?  She wasn’t sure what I meant, but I really didn’t know if there was a color ribbon for childhood cancer.  So, she took out her iPad and a quick search found us gold.  The gold ribbon was the color for childhood cancer.

 So we headed to Michael’s and bought up as much gold ribbon as we could find. We bought lots of safety pins.  We set to work cutting and pinning.

We dropped baskets off with my Uncle Chris and cousin Katie (“Angel Meghan’s” Dad and sister.)  They were eager to help, and passed baskets off to friends of theirs.  Before we knew it we were making more ribbons, and more bookmarks.

Meghan was so absolutely thrilled to raise over $500 for the project.  It was such a huge success and we were so proud.

That project raised her awareness of her ability to do for others, and helped her confidence so much.  It also made her aware, acutely aware, of cause ribbons.  She would identify the ones she knew, like the pink ribbon for breast cancer, and she would look up ones she didn’t know.  She learned about the puzzle piece for autism, and even yellow ribbons being used when soldiers are away from home.  I think that is the project that truly got her using a search engine too.  (Thanks Mrs. Azzarello!)

It seemed only natural, that months later, having watched me receive pink ribbons after my breast cancer surgery, and after countless surgeries and appointments of her own, that she would ask what “our” ribbon was.  Not sure of course exactly what she meant, I had her clarify.  “What is the ribbon for genetic diseases?”

So back to the search engines we went.  We tried a few other places. but eventually decided that this was the one.

It made sense.  The Global Genes Project had a logo that reflected her cause.  This was the ribbon for Rare Diseases – genetic disorders like our Cowden’s Syndrome.  It Made sense, their saying, “Hope – It’s in our genes” was catchy enough, and it left you thinking about the connection between genes, and jeans – the denim ribbon.

The next question should have had a simple answer – but it didn’t.  She said, “Can I have one?”

Once she clarified that she needed something, something to represent her, and all she has gone through, I understood.  She needed a symbol, something to wear that would make it easier to talk to people, that would help her feel proud, and strong, like it all mattered.

Sure, I thought.  We will get you something.

Well I looked, and I looked, and I looked.  There was nothing.  Beyond the sticker I had gotten as a thank you when I sent a contribution to The Global Genes Project, I could find NOTHING for her to own or wear, no jewelry or clothes with this “denim” ribbon.

Well sometimes the best ideas are born out of lunchtime conversation.  So, as I sat with some teacher friends the next day, I recanted Meghan’s desire to have her own cause ribbon.  One friend, the pure hearted Mom of an autistic son, who was wearing a beautiful diamond puzzle piece around her neck, “got it” on so many levels.  And, her husband happens to be a jeweler.

She said, “give me what you have, let’s see what we can do.”

Well I think we all thought it would be easier than it was.  But after weeks of searching her husband determined that there was nothing, anywhere like what we were looking for.  If we wanted it, we could have it, but they would have to make the mold.

Fortunate to have good and generous people in our lives, we paid only for the cost of the creation of the piece.  My friends husband generously donated his time, because he too “gets it.”  Their goal was only to make my girl happy.  And for that I am so grateful.

After anxious months of waiting, the piece arrived last Friday.  She treats it like a rare gem.

It is RARE, a one of a kind beauty – just like my girl.  But, never staying focused on herself for too long, she thought – wouldn’t it be nice if we could do a fundraiser, and sell these so that we could raise money for The Global Genes Project?

Well, last Friday we sent them an Email with several pictures.  It is a crazy time of year, but we are anxious to hear from them, and hoping that Meghan’s idea, can benefit many others.  It would be fitting.  That’s just the kind of kid she is.

For now though, the necklace is “one of a kind,” just like her!

Bookends

So my little girl took some of the influence of her Dad and has taken a liking to comic books.  She has been reading them on her Ipad, and although I might not admit it to either one of them, I kind of like the idea.  I like Superheroes, and their “Good beats evil” message.  I know it doesn’t always work out that way, but she is 9…

I sat in the MRI room with Meghan tonight – again.  And even though it is a wonder I could think of anything over the banging of the machine, and the remnants of this migraine I have been fighting for days, I kept thinking of bookends.

Yep, bookends.  See, back in June, on the first day after school was out for the summer we went for an MRI of her knee.  It was a Thursday, the Thursday before July 4th.  So, how ironic I thought, when earlier I was sitting in another MRI, this one of her brain, on the Thursday before Labor Day.

Bookends.  Our summer ends the way it began, waiting for test results.  Although I am starting to get the feeling that this testing and waiting will transcend all seasons.  I will just notice it more in the summer – the season where I have one full time job (Mom to Meghan,) rather than two (Mom to Meghan AND teacher.)

And I am reminded of the image of the dog digging up the street that Meghan found for me a few weeks ago.  This is what we do.

We do not accept anything less than an answer that makes Mommy comfortable.  When the doctors tell me that puberty is just starting earlier these days, I buy it – to a point.  When they tell me to consider all the hormones in the milk, and the chicken, I raise an eyebrow.  My girl who has been dairy free since she was 15 months old, and has almost never consumed a piece of nonorganic chicken, who is at or below the weight for her height, and who has a mom who went through puberty LATE, should be one of the early ones… I just don’t buy it.  So when the hormone tests don’t match, and I get doctors refusing to answer me, I push harder.  That is what the MRI was today.  My fault.  I needed to have them rule out a pituitary tumor.  We have Cowden’s Syndrome.  We grow things.  Someone should check.  Just sayin… Then, when the results are clean in a few days I will breathe deeply and accept that this just IS.

And the recurrent strep… well lo and behold, the ENT said there is regrowth of the tonsil tissue.  He wants to see her the next time she has strep.  He shouldn’t have to wait too long.  He also told me the right lobe of her thyroid was quite enlarged.

So we wait for the thyroid panel, and wonder if it has changed drastically.  And, we think of those nodules on her thyroid and the doctor who told me they will turn… not if – but when.

Bookends.

We started the summer at the doctor.  We spent most of the summer at the doctor.  Scan this, check that.  It will never happen like this again if I can control it, but it was necessary this time.

And in between the bookends of MRIs, we fit in some fun stuff.  There were some great play dates. a day trip to the beach, some swims in the pool. a FABULOUS trip to Disney, a week of Vacation Bible School – (although not our “favorite”one.)  There were some lazy days, and lots of just being together time.  We can get a lot of talking in on all those trips to the doctor.

I guess the summer wasn’t a total loss, and yet still somehow I feel sad.  Cheated.  I stress at the thought of the scheduling complications being back at work brings.  Holding up the appointments of a regular kid (eyes, orthodontist, swim class, PT, dance…) is tough enough.  Complicate it with Cowden’s x2 and it gets hairy.

Maybe I feel like this every summer.  Maybe I just love my girl too much.  Time marches on.  School next week ready or not!

My beautiful 9 year old!

“The Velveteen Rabbit”

by Margery Williams

“Real isn’t how you are made,” said the Skin Horse.  “It’s a thing that happens to you….

…”It doesn’t happen all at once,” said the Skin Horse.  “You become.  It takes a long time.  That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept.”  Generally, by the time you are Real, most of your hair has been loved off. and your eyes drop out, and you get loose in the joints, and very shabby.  But all those things don’t matter at all because once you are Real you can’t be ugly, except to people who don’t understand…”

I spoke to the oncologist today, about my MRI.  She had really no better or clearer information than the nurse I spoke to Friday.  The harmatomas are large.  There are several.  They might be able to stay, they might not.  She requested the sonogram from April to see if it is worth a comparison.  I will get the CD and the reports and send them along.  I will let the doctors again analyze the same few articles on Cowden’s Syndrome that exist.  I won’t tell them that I have likely read all of them myself too.  I will let them tell me if the spleen stays or goes.

I think it is that conversation, combined with the one I had with Meghan that brought the story of The Velveteen Rabbit to my mind tonight.  As we are buying clothes for school and trying to keep her quickly developing body comfortable and appropriate, she asks about my scars.  There are quite a few, the lipoma in my neck, the partial thyroidectomy, the C-Section, the hysterectomy, but she focuses on the mastectomy. and the scars from the reconstruction.  She asks sometimes to see them even as they are covered.  She asks if she will get to decide when to have that surgery.  “IF” I stress, “IF!”  You don’t know…  But she knows.  She is preparing already for the day it is her turn.  It twists my stomach in a knot.

We have had between us more than 25 surgeries, large and small.  We have scars of all sizes – inside and out.  But we are “Real.”  In a deep, important sense, we are “real” to each other.

I am in limbo… waiting.  But it is ok.  I live in a house where I have become “real.”  And, even on my darkest days, “…once you are Real you can’t be ugly, except to people who don’t understand.”

“It’s not fair!”

“It’s NOT fair Daddy!”  Came the screech from the basement.  I held my breath. 

“You can’t do that Daddy!  It’s NOT fair!”

When I heard my husband return the challenge with an “Oh yeah? Watch this!”  I knew all was well.  The giggling that followed sealed the deal.

I couldn’t help but find it a bit ironic that of all the things that have gone on in her life, she chooses a helicopter game in the basement with her Dad, to shout the words,”IT’S NOT FAIR!”

She didn’t use those words once, all summer, when we spent what I equate to an OBSCENE amount of hours in doctor’s offices and waiting rooms.  She didn’t utter those words as she was poked and prodded and asked the same questions over and over. “They never find the answers anyway, Mommy.”

She didn’t tell me it wasn’t fair, when instead of planning playdates, or camp experiences we were trekking back and forth to Manhattan, for her, or for me.  She simply wiggled in the play time when there was room.

This morning, when I sprung on her the idea that she needed bloodwork, after the bank, and before the orthodontist, she could have EASILY told me. “It’s not fair!”  And I would have understood.  I know very few people who have given up more blood than she has.  And when the lab was full, and we had to come back later, so she could think about it all day, she definitely could have told me, “It’s not fair!”  But she didn’t.

This morning when we learned that her braces are imminent, and that she is going to need to contend with them in addition to her new grade and ever changing body – I expected a yell.  Nope.  “Won’t it be great to have them off before most of my friends even get theirs on?”

So as I scheduled one more MRI this week.  This one for her, to make sure the pituitary is its proper size with no extra features… I thought it would be a big foot stamping, “It’s not fair!”  Nothing.  Just the typical, “Can you stay, and will I need a needle?”  Followed by, “I hope I can watch a movie this time because I don’t like having my head done.”  How disturbing that this will be her third brain MRI.

This has been one hell of a summer, following one seriously wild spring.  I have lost count of the appointments, and it is probably better.  They aren’t going anywhere and we will continue to have to roll with it.  As the last week of summer vacation comes to a close, and I lament the lack of relaxation, the cleaning that never happened, the day trips that never came to pass, I want to shout, “IT”S NOT FAIR!”

But then I look at my 9 year old.  Wise beyond her years.  Content to live in this house where she is so loved and appreciated.  We have had many talks about the suffering of others through the years, and especially this year.  She knows she is not alone in having a tough path to travel.  She also knows it could be worse.

Maybe that contributes to the poise and grace under pressure.  Maybe that is why she is so insanely mature.  Or maybe, in the midst of the chaos that is Cowden’s Syndrome, we – her father and I – are just the luckiest parents in the world.

But God is good – all the time!

“I plan, God laughs.”

I really should listen to my Mom…

My Mom says this… a lot.  And she is usually right.  I am a planner by nature.  Mom, although sometimes reluctant to admit it, is a planner too.  The difference is that the wisdom of her years have helped her tone down the level of planning so it is a bit less obvious, and she has also – wisely- learned to keep many of the plans she does make – to herself.

I like to organize everything, and quite simply put – Cowden’s Syndrome is chaos.  At least right now.

I mean eventually maybe it will fall into a neat little schedule of screenings, and routine visits, but right now – not so much.  If you saw the legal size yellow pad on my desk you would chuckle.  I have appointments planned until February of 2013.  And, at first glance to list doesn’t look too bad.  I was proud.  I got to these appointments early.  They are all routine.  They will all happen after school or on vacation days.  My terms.  But then we get to the unscheduled ones… and the follow ups… and the new visits.  That’s when things start getting hairy.

I called the oncologist‘s office today to get the results of my MRI.  The oncologist is away until Tuesday, but a very kind nurse called me back in about an hour.  She said, “Everything is benign.”  I wasn’t sure to be relived, or panicked.  What “everything?”  So she started with telling me my liver is just fine.  (Well thank goodness, because I hadn’t even THOUGHT to worry about my liver.)  She then proceeded to tell me there was a “small cyst” on my kidney, but that was probably no big deal. (And probably not a worry unless you live in a subgroup of people that have a 33% lifetime incidence of renal cell carcinoma.) She continued by telling me my spleen was “a bit more involved.” Hmmm… never have those words started a positive conversation.

The last two times I have had abdominal sonograms, both have very matter of factly stated that there is one 3.5 cm harmatoma on my spleen.  Ok, I had decided all by myself… if it stays 3.5 cm and behaves, we will just leave it there.

Well, apparently there is a “vascular lesion” that is a “significant” size, and “several” small harmatomas on the spleen.

So I said, “what does this all mean?”  That is when she said we would have to wait until the oncologist returned to determine the necessary next steps.

“Can I have a copy of the report?”

“I would rather not send it to you until you speak to the doctor.  I just wanted to reassure you there were no malignancies.  She may want you to come in.”

Which is where I did laugh out loud.  Come in – to hear a summary of what I was just told?  No thanks.  Just tell me what I need to do next and I will get it done.

I looked at my nice yellow pad, where September  previously had no appointments, and I see the colonoscopy written in for the 18th.

I have to say I was pretty sure 2 major surgeries for me, meant I was done for the year.  There goes that planning again.  Maybe I will keep my spleen and its harmatomas forever.  Maybe they will make me have it out.  Truth is I have no idea.  And I can’t plan for it at all.

School starts in a week or so.  My life apparently doesn’t always jive with the school calendar.  I will have to roll with it.

More importantly, Pop’s birthday is tomorrow.  He is 93, and a true inspiration.  My family will gather at my house to celebrate him.  I couldn’t be more excited.

I really think I am OK with this concept, but we all need a reminder sometimes!

I will get my results Tuesday, and life will go on.  It will all work itself out, as it has for… well forever.  I will try to keep the planning in check.  I really do try.

The only thing I am planning tonight is how many chairs I need for Pop’s birthday celebration!

Whose afraid on an MRI? Not me – practice makes perfect!

MRI

So as I was positioned to be rolled into the MRI tube today, I realized my heart wasn’t even racing.  Not that I ENJOY an MRI, it’s just they have become so familiar that they no longer provoke the anxiety they used to.  I have held onto Meghan‘s shoulder through countless knee MRIs, and this past year have had quite a few of my own.

Today it was an abdominal MRI.  Now if you have been following the story at all you know my abdomen is missing a few things.  You may or may not know that there is also the issue of a harmatoma (basically a fatty tumor) on my spleen from this PTEN harmatoma tumor syndrome.  Yep, that’s the other big fancy name for Cowden’s Syndrome – or more technically it is the umbrella term that covers Cowden’s and several other syndromes.

So, why the MRI?  Well among the other neat cancers that seem to come with this genetic mutation, is renal cell carcinoma.  A recent study, the same one that put the lifetime breast cancer risk at 85%, placed the risk of renal cell carcinoma in Cowden’s patients at 33% Yep, quiet old kidney cancer – hiding there until it causes you a problem.  So, they like to screen for it – twice a year with an abdominal MRI.

http://www.ncbi.nlm.nih.gov/pubmed/22252256

Part of me wishes they could just do the kidney.  You see I have this theory about taking the used car to the mechanic…  You just sometimes find out more than you wanted to know.

OK Used Cars

 I really am not in the mood to lose any more organs.  I think I have reached my quota for the year.  And I have to tell you, this is one hell of a way to lose a few pounds.

So, somtime tomorrow or Monday the oncologist will call me.  She will tell me that the kidneys look great.  She will tell me that the harmatoma on the spleen hasn’t grown, and it can stay right where it is.  She will also tell me that the stones they saw on ultrasound in my gallbladder a few months ago are no problem at all.  She will tell me all that because that is what I need to hear.  And hopefully it will all be true.

I need it to be true.  Because I will be busy.  An appointment right before the MRI with a new GI set me up for the “necessary” screening endoscopy/colonoscopy on September 18th. The risk of colon cancer is a meager 9%, up only a few % points from the general population, but no point leaving any stone unturned I guess!

Some days I wait for the break.  The time when we will be without doctors.  Then I realize this is all so new.  They are all so scared and confused they are doing all they can when they scan this, study that…  Hey, it worked for me when they saved my life with the breast cancer.  And, it will work to keep my girl safe as we scan her thyroid religiously.

I am tired.  I would be lying if I said anything else.  I am TIRED of doctors.  But, as I said before… I will keep going, necause there is no choice.  Plus, “Everybody has SOMETHING!” https://beatingcowdens.wordpress.com/wp-admin/post.php?post=693&action=edit

At least I am not afraid of the MRI tube anymore!

The Carousel of Life

How can you tell if it’s really progress?
When we were in Walt Disney World, one of the rides we went on was “The Carousel of Progress.”  Now I must admit this isn’t one of my all time favorites, but it does serve to cool you on a hot August day, and provide some food for thought.

For those of you who have never been, it starts out in the early 1900s and has several scenes detailing progress through the years.  Of course, with all progress, there are a few snags along the way.

The state of the art kitchen in the mid 1900s, looks nothing like the state of the art kitchen in the 21st century.

 

 

 

 

 

 

And I think the lesson to be learned by those of us cooling off in the comfortable Air conditioning, is that with every new change, we lose a bit of the old.  It is often beneficial, and frequently necessary to improve, but we need to keep an eye to where we have come from so we don’t lose ourselves.

So why was this on my mind – aside from sorting out the Disney Photos?  Today was a doctor day  – again.

Today we took a 2.5 hour (should have been 75 minutes) road trip to Long Island to see Dr. E.  People ask me all the time who he is, and why we see him.  Well, the truth is, he is kind of our “think outside the box” doctor.

We first met him in 2005.  Meghan was severely delayed in many areas.  Her behavior was at times scary, as she was having fits of rage that were tough to manage.  She was bloated, and her belly was in terrible shape.  She wasn’t speaking much, and her speech and occupational therapists were starting to whisper “autism” to me.

Not feeling at all like that was where she was, we headed to see Dr. E, a DAN! (Defeat Autism Now!) practitioner.  He had been a pediatrician for over 20 years and had recently made the change to treating children with biomedical interventions.

It was a scary commitment to see such a doctor.  There was no insurance at all, and the initial out of pocket fees were frightening.  But when we sat and spoke with him, and he told us about the ways he was going to help Meghan – he meant it. 

It is 7 years later.  My daughter is a far cry from that sensory sensitive, sickly, silent, little girl we brought him in 2005.  We have gone through countless lab tests, various diets, vitamin and mineral supplements, prescription and non prescription medication.  He has seen us through her gall bladder attacks, and has answered my texts and Emails at the most obscene hours.

Progress.  At a cost.

Not just a financial cost, but an emotional one too.  And now we hit a crossroads again.  Progress is at a standstill in many ways.  (Not in the bright, articulate, funny girl, but in other ways people don’t see.)  The strep is returning to life on a regular basis.  Her development is not agreeing with her hormone tests.  Her belly bothers her, and she needs medicine to help her sleep.

I spoke with him at length today.  He wants me to see a very intelligent nutritionist in NJ for a very specific test.  It will uncover some of the “mysteries” we are missing, he says.  We are past the point where we can look at her and treat her.  She appears well, but there are too many things that don’t make sense.

What about the Cowden’s I ask?  What about the PTEN?  Isn’t that the cause?

To which he gives me the honest, “I don’t know.  There isn’t enough research.” 

But, he insists what he does know, is that we will gain a wealth of information from this test.

It is costly, and there is no guarantee the insurance will cover it.  But, she is worth it, and we will likely set it up.  The question is when?

School starts in a week and a half.  I have 2 appointments tomorrow, she has 2 Monday, and another Weds.  There comes a point where we have to stop running like this.

The Carousel in Ocean City, NJ

When I was a little girl we vacationed in Ocean City New Jersey.  I used to like the carousel, but I wasn’t as daring as my sister – who would lean over and reach out for the rings.  I liked to hold on – tightly.

Some things haven’t changed.

I think about this carousel as well, moving in circles, sometimes seeming to get nowhere.

I find all these appointments all consuming, almost overwhelming.

Then I stop and think – it’s not about getting there, it’s about enjoying the ride.

Progress will come…