Tag: Cowden’s Syndrome

LAZY?

Published on by beatingcowdens1 Comment

I think its Ok to say we have character.  Lots of people I know have character.  That’s why I spend time with them.  I know lots of people who have traveled through their own trials and persevered.  We are all unique, but the same in our drive and ambition.

Why is it then, that not all of our doctors have character?  Some do.  They work so hard.  Even when they are throughly confused, their wheels are always turning.  They return my calls, and my emails.  Instead of thinking, “This Mom is NUTS!,”  they think,”What is wrong with this kid, and (more importantly) how can I help her?”

We have some of both kinds of doctors in our lives right now.  In all honesty, I have had better luck overall picking from the doctor pool than Meghan.  Even with some bumps in the road, my problems, not withstanding the Cowden’s Syndrome – have all been fairly easy to diagnose and treat so far.

Meghan on the other hand has run in circles since she was a baby.  We have had this kid at a flow chart of professionals, and while we have gotten some significant and important answers along the way, I find it almost inexcusable that she is still suffering with random, unexplained fevers and headaches.  I find it disgraceful that she has been on a rotating cycle of antibiotics about every 8 weeks for over 2 years and no one but me is screaming about it.  I find it downright scary that she needs 100mg of Celebrex a day to move, and 1600 mg of acyclovir to keep the Herpes Simplex infections at bay.

So, when we went to see our beloved pediatrician today, who is deeply bothered by this recent fever/headache thing, I brought with me an EMail exchange I had shared with a doctor at a world-famous NYC hospital.  Sparing you the exact read, after summarizing the last 2 weeks, and sending lab work, as well as a brain MRI with an unusual finding, this doctor responded that he felt there was “no necessary follow-up, and he is sorry Meghan isn’t feeling well.”  After reading this aloud to my soft-spoken, proper, pediatrician, his calm reply was, “He is just LAZY!  And you still NEED to find her a neurologist.”

Interesting to contemplate that this doctor from this world-famous hospital was being called “Lazy,” but I have never heard my pediatrician speak ill of anyone.  Now I doubt the man is lazy in the literal sense of the word, but in the “problem solving, figuring out the mysteries of what makes my unusual patients tick” way, I guess he is.

Meghan’s pediatrician is one of a small group of doctors we are blessed to know.  They are few, but they love her like she is their own.  They believe her.  They validate her.  And they won’t stop pushing until they figure it out.

So, while I get tired from running to doctor after doctor… tonight I am grateful for the men of character.  The ones who take seriously their oath, and who remember why they became doctors to begin with.

The New Normal

Published on by beatingcowdens3 Comments

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.

Fighting My Way Out of the Cage

Published on by beatingcowdens4 Comments

A few days ago I wrote about my dog Lucky – biting through the cage.  Well she got her wish, and she is a free dog now.  Free to roam around my house, lay where she wants, and drink when she wants.  She is much calmer and happier now.  It doesn’t take much to make her happy.

Why then can I not take her lead?  Why am I living in the cage of my own thoughts? 

My husband, he has the right idea.  He worries only when it is absolutely necessary.  I worry about making sure the stove is turned off.  He worries when the house catches fire.  Maybe it’s a male/ female thing.  Maybe it’s my controlling OCD.  Who knows?  What I do know is he is MUCH healthier than I am mentally.

I am still quite sane, but admittedly neurotic.  Some say it was inevitable after the year we have had.  I think it stretched back much farther.  I could say parenting a not so healthy child has done it, but if I am honest, I think I have always been this way.

I just read a Facebook friend’s post.  She talked about her brain continuing 24/7 even when she asks it not to.  That’s EXACTLY how I feel.

I am sure the Cowden’s Syndrome, the mastectomy, the breast cancer, the hysterectomy, the tumors on the spleen, the cyst on the kidney, and the constant screening tests aren’t helping.  And those are just mine – not Meghan‘s!  We average 3 doctors a week, usually at least 2 on the schedule and a pop up.  Each one seems to look, poke and prod and not offer a single answer.  Then the tests lead to more tests.  It’s a bad cycle we are in here.  So then I spend my spare time researching – thinking maybe I can find the answers they don’t know.  I end up just as clueless and thoroughly exhausted.  Sometimes you have to stop biting at the cage, realize the answers aren’t there yet, and realize you have the power to let yourself out.  I am “luckier” than my dog Lucky – no pun intended.  I have the benefit of being able to free myself.  I just never seem to get it quite right.

I am going to try that one day at a time thing again.  I am going to try to concentrate on all the many things that have gone right.  I will TRY to worry less when my daughter’s WBC is frighteningly low, while I wait for the retest.  I will worry less about West Nile Virus, and just try to treat the 8 mosquito bites on the leg of my immune compromised kid.  I swear I will try.  It’s not going to be easy though.

When you see me in a fit of worry, feel free to give me a “cyber” smack into reality.  ONE DAY AT A TIME!

TODAY – good things happened.  I got through the baseline screening colonoscopy and endoscopy.  The colonoscopy was completely CLEAN!  I do not have to go back for another 3 YEARS!  Beats the heck out of the every 6 months they were recommending for Cowden’s patients.  Also, my CLEAN scope frees up my little girl for a while.  As long as mine stay clean they won’t start screening her until she is at least 18.  Breathe.  Some minor biopsies on the endoscopy but the doctor is expecting a CLEAN pathology.

For me, for my daughter, for my husband, and for ALL of us who are fighting our way out of the cage.  We can do it – one day at a time!

Friends…

Published on by beatingcowdens1 Comment

It was hard to believe it had been so many years since we were all together.  It was even harder to imagine it was over 15 years since we all shared space, time, and our souls in SUNY New Paltz.  It was a far cry from most of our late nights at P & Gs.

As a matter of fact , as we sat across from each other at The Cheesecake Factory in New Jersey, two of them pregnant and all of us chatting about our children, and old times -often in the same breath- you never would have imagined the amount of time that passed since we last spoke – face to face.

But the food was decent, and the conversation refreshing, and I found myself wishing it could happen more often – or last a lot longer.  It hardly seemed right to get up when only a few hours had passed.  But each of our lives called us away.  To children, and husbands, and lives that needed tending to.

As we hugged each other, and I watched my two friends ‘baby bumps” bang into each other, I was reminded of the reality that real friendships truly do last forever.  We picked up with each other as though graduation had been last week, and although there was so much more to say, there wasn’t a moment that lacked conversation.

Facebook has been a blessing for us.  A way to keep tabs on each other, and keep track of the major happenings.  These ladies used Facebook as a means of support for me over the last six months, when some days it seemed the sky was falling.  They reached out to me – as if we were still next door neighbors in New Paltz.  Facebook arranged our meeting last night.  As a simple group message “Hey can we pull this off?” – and I am so grateful we did.

See in order to stay sane, life has to be about more than Cowden’s Syndrome.  It has to be about more than knee pain that wakes my girl up in the middle of the night after only 4 days without her Celebrex.  (At least we tried!)

Life has to be about more than infections that scare me half to death, viruses that take hold way too fast, and doctors that want to fix it all but don’t know how.

It can’t always be about tumors, and, “Are they growing or not?”

It can’t always be about the tests and the screenings, like tomorrow’s colonoscopy.

The recovery room at tomorrow’s colonoscopy site!

Those things are always going to be part of our lives – forever.  They aren’t going away.  That is the reality of Cowden’s Syndrome.

But the real reality, in the world where we know too well that “Everyone has Something,” is that it is necessary to make time to hug old friends.  It is helpful to the soul, to relive old times, and to sometimes sit and have dinner with people who stood beside you years ago, and who have made it clear they are prepared to do the same now.

Biting through the cage

Published on by beatingcowdens9 Comments

My dog Lucky is a bit neurotic.  She just is.  So when I came home today to find she had chewed through half her metal crate – literally lifted the bar off at one point, I wasn’t all that surprised.

Lucky (the black one) and Allie, playing together.

It got me to thinking though.  No one, or thing – really likes to be caged.  The “girls” get plenty of time to roam free when we are home, and when we are not, but we have to make the best decision for them each time. 

What struck me thought tonight, when I saw a piece of the metal crate literally bent off, is exactly how much she doesn’t like the crate, and how much she wants out.

We feel like that sometimes here – about PTEN, and Cowden’s Syndrome.  We feel like we are stuck, in a locked crate.  We want to run free, but the daunting tasks that lie ahead make it seem like an “Escape from Alcatraz” might be necessary.

Meghan’s fevers this weekend scared me.  I know her immune system deficiency may stand alone from Cowden’s, but that doesn’t make it any easier to process.  And, I swear if they were not related before, they feed off each other now.

The fever was gone Sunday night.  It made another showing of about 102 and then that was it.  She stayed home Monday with our friend Patty, and was treated like the princess she is.  By the time I came home Monday she looked so much more like herself.

We went to the pediatrician Monday night.  He wants me to contact her oncologist and get a referral to a neurologist to address the intermittent headaches she has been having.  Her oncologist who Emails quickly, got a set of all the recent labs and the recent brain MRI.  She is going to get back to me.  I have no idea where we will fit one more doctor in – but we will figure it out.

So this morning, we woke up feeling ready to go.  She responds so well to antibiotics, that we were seriously on the mend.

After she brushed her teeth she complained her gums were bothering her.  I didn’t see much. 

Tonight she said it was much worse.  There is a growth on her tongue.  Right on the edge.  It grew today.  During the day.  No idea why.  No clue what to do about it.  I don’t know but it reeks of Cowden’s and its NASTY overgrowth – of everything.

I guess I will deal with it tomorrow, right after I call on the throat culture and find out if we need to see the ENT.

Someone told me today I looked tired.  Not me.

If you need me, I will be biting my way through the crate, getting rid of one bar at a time.  Maybe Lucky las the right idea.

Stay tuned…

Published on by beatingcowdens2 Comments

I learned a few things as I set up my classroom this week.  Many of them I will not say here, because Mom always says, “If you don’t have anything nice to say, don’t say anything at all!”  Well at least that’s what she used to say when we were young…  but I digress.

I have been without my own classroom for a few years now.  I have been a traveling math cluster, and then last year shared a room with a colleague.  This year I was given my own 3rd floor room. It is harder to have a room, but change is good – so I was ready and excited to try it out.  And grateful for the opportunity. 

See last spring my colleague and I were told we were to share the 3rd floor room.  So, in the heat of June we brought everything we could (using LOTS of kids to help) up to that room.  The rest of my personal belongings (from the first 10 years in the classroom) were stored in a nearby storage closet.

Sometime over the summer I got an Email that the schedule had changed.  The third floor room would be mine alone, and the 1st floor room would belong to my colleague.  So I set about the business of buying all the things you need for a room.

I brought my things in on August 22nd, but I couldn’t stay to set up.  Meghan had an appointment.  As a matter of fact I couldn’t come in the next day either because of two of my appointments -so I first got in to get settled yesterday.

Much to my surprise, the storage closet where all my personal things were had a new lock.  I didn’t have a key so I took that as my clue to vacate. 

Now, prior to the Mastectomy, I was pretty strong.  I helped my husband renovate the house.  I know how to move heavy things.  Prior to the hysterectomy and the mastectomy – just a few short months apart, and just 6 months ago… I felt like this.

Now, after moving boxes for 3 hours yesterday. up and down the stairs, even with the help of a few well intentioned friends, I feel more like this.

I am sore in places I had no idea it was OK to be sore.  This was either an eye opener to my age, my body’s fatigue, or the fact that it is time for some serious exercise.

But, after 2 days my classroom went from this:

To a lot closer to this:

Which is a good thing, because I just don’t do clutter well at all.

So when I left a little more relaxed it was time to get a confusing phone call from the doctor.

Meghan’s blood panel appears normal, but I have to compare the thyroid numbers off the last one when I see it.  That was OK, and then he said the MRI had an “ODD” finding – shocker!

The “anterior pituitary tissue is seen though it is diminutive in size for age.”

Still actively trying to figure out what that means, especially because we were scanning for a pituitary tumor to try to find the cause of the early puberty. Now, clearly the pituitary is TOO SMALL?  Really?  I just can’t figure this out.

Grateful there is no tumor, I asked the doctor if it was insignificant.  To which he replied, “Everything means something.  I have never seen this before but I will be asking a lot of questions.”

So, fourth grade for my big girl tomorrow.  One day at a time, this is all we can do…

One of a kind…

Published on by beatingcowdens9 Comments

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

Published on by beatingcowdens1 Comment

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”

Published on by beatingcowdens6 Comments
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.”