Tag: pten mutation

I really wish I had kept my broken genes to myself!

Published on by beatingcowdens4 Comments

Apparently this has become like a sleeping pill to me.  This is the place I go at night, to sort out all the emotions of the day before I can try to find some rest.  I can’t imagine that will do anything to gather more readers, but it is certainly helping my sanity.

I am trying to find the balance, for both my daughter and myself.  The balance between being properly scanned and “on top” of all our countless risks, while not letting doctors take over our lives.  Because the truth is, they don’t know a whole heck of a lot about Cowden’s Syndrome.  Most of them don’t care to find out, and the few that do, well – I will let you know.  I think we have 3 between us that seem truly willing to learn.

So today I took Meghan to the vascular surgeon.  The same doctor that has embolized the AVM in her knee 4 times.  The same doctor who in February, right after the 4th procedure, handed me the name of a doctor in Boston.  “We just drained  30 ccs of blood from under your daughter’s kneecap.  I don’t know why it was there.  You should go meet with this doctor and see what he has to say.  He will likely want to put a scope under her kneecap after she has healed.” 

After ascertaining it wasn’t an emergency, but not something we should sleep on, we met Dr. K in Boston over the April break.  He examined her, without the CD images that I had pleaded with the NY doctor to send up 3 weeks PRIOR to our appointment.  He said he wanted to keep an eye on it, and to repeat the MRI/MRA in 6 months.

So we did.  And on Monday the PA who had been in the OR with the surgeon and my daughter 4 times tried to tell me there was nothing in her knee.

Today, armed with a 2 page report and the paper the surgeon gave me in February with the Boston doctor’s name on it, we went for our visit.

I am still confused by the number of inconsistencies that happened in one small room.  The surgeon began by taking back his concern from February and telling me he just wanted the Boston doctor to get a baseline on Meghan “just in case.” 

Which, I though to myself, I am sure is true because I definitely would have made a 5 hour drive 4 weeks after a double mastectomy if he was so nonchalant.

Then, he held to his story that there was nothing in her knee.  Even as I pointed to an obvious bump he told me it was nothing.  I questioned him on the report, the one that says there is a stable 2.8 x0.7cm mass.  He told me he reviewed the CD and disagrees with the report.  Even as I told him I found the report to be strikingly similar to the December report, he offered to sonogram the knee to confirm “nothing.”  On sonogram he said there is a gathering of tissue (do I need to define mass?)

So, he said to bring her back in 6 months.  They will reevaluate.  Then we will repeat the MRI in a year.

Have I mentioned I cry when I am frustrated?

Well somewhere about 10 minutes into the conversation, when he was busy changing his story and disagreeing with the report I got overwhelmed.  Shouldn’t have done it, but I cried.  Fatal mistake.  I now look like a complete ass, when that is his job.  And he does it better than I ever could.  He actually had the nerve to lecture me that I would make my daughter upset.  I still can’t believe I took that.  (Still stewing!)  AND, I shot Meghan th evil eye to keep her quiet and remind her of her manners.

I HATE the crying thing.  I have been working on it for years.  UGH!

You know I wasn’t crying because i was sad.  I actually was really relieved at the thought that no surgery was necessary.  I was frustrated by arrogance, lack of clarity, and overall lack of concern for my daughter the whole person.

See, no one else knows the tears she sheds about this damned knee.  The things she can not participate in, or the modifications she has to make just to avoid pain.  She does them effortlessly.  Every day.  No one knows except me.  And it kills me.

So when we were leaving I tried to find the bright side.  I said, “See, at least you won’t need knee surgery this year.”  To which my far too bright, soon to be 9 year old responded, “I am not sure. To me surgery makes it worse, and not having surgery means no one is going to do anything to make it better. Guess my knee is going to feel this awful forever!”

Now I could have tried to tell her that maybe it will be better by itself, but I respect her way too much, because as much as I would love to believe it – I don’t.

AVMs are difficult to deal with anyway.  When you combine them with a PTEN mutation, they are ridiculous to control.

Just one aspect of a multifaceted disease.

I really wish I had kept my broken genes to myself.

EVERYONE has SOMETHING!

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Disney World 2011

Meghan and I have a lot of “deep” conversations.  More than you might expect an 8 (almost 9) year old to be capable of.

Today she was wondering why we have to have Cowden’s Syndrome.  Why is our PTEN gene broken?

Well, I said to her, everyone has something to deal with – and this is what we’ve got.

She thought for a minute, trying to figure it out herself, and then said, “What do you mean?”

“No matter where you go in the world, in every city and town, in every street, in every country, on every continent – EVERYONE is dealing with SOMETHING.”

I told her there is a saying that goes around “If everyone could toss all their troubles into a circle, and choose which ones we wanted, we would likely take our own back.”

Almost indignant she said,, “Why would I take back Cowden’s Syndrome? It stinks.”

“Yep, but would you trade it for the family that doesn’t have enough money to buy food, the family that lost their house to a fire, the family where the parents have lost their jobs, the family where the parents aren’t in love, or are divorced, the child who can’t have any pets because her sisters are allergic, the family whose Mom or Dad died, fighting for the freedoms we celebrate today?”

It doesn’t take much for her to “get it.”  That’s why I love her so much.

Christmas 2011

“There are kids without dogs,” she said.  “Lots of them.  And I really love Allie and Lucky.

There are kids without their own room, or even their own house.

There are kids whose Moms and Dads don’t love each other.

Some kids have other diseases where they have to go to the hospital even more than me.

Ist Holy Communion 2011, with GiGi and Pop

Some kids don’t get to know their grandparents or their great- grandparents, like I do.

I get it Mom, I think I do.  But, still it seems like some people have no worries, no problems at all.”

“Those are the people I worry most about Meghan.  Those are usually the people whose hearts hurt.  They are often alone, or insecure, or feeling unloved.  Trust me, EVERYONE has something.”

Fireworks!

“I guess you were right Mom.  I don’t like having Cowden’s Syndrome… but I wouldn’t trade our life for anyone’s.”

“I am glad – me either.  Our “thing” to handle is medical, and we will get through it – together. Tonight we celebrate our country, and the freedoms it was founded on.  We celebrate the soldiers who fought for our freedoms, and the ones that continue to fight. It is those freedoms that allow us the ability to battle whatever “thing” plagues our own life. 

 We are all struggling, and we are all lucky.”

Still waiting…

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WARNING – This post may be uncharacteristically whiny and cranky.  It is boring, and lacks any pictures or “fun stuff.”  Maybe its the heat.  Maybe its the start of menopause, or maybe, just MAYBE it’s the WAITING!

So, last year when we were first diagnosed with the Cowden’s Syndrome, the geneticist suggested my daughter and I each be followed regularly by an oncologist who would act as a ‘case manager’ of sorts.  Seemed logical.  We got Meghan set up with a doctor in NYC.  She actually has experience treating “patients like us.”  We thought we were golden.  She ordered the initial scans for Meghan (and even for me) of the brain.  She ordered Meghan’s thyroid sonogram, and her biopsy last November. 

Well, that biopsy was a traumatic train wreck to say the least.  To make it worse, when we spoke to the oncologist about it she was defensive of the doctor she had sent us to.  We moved the biopsy slides to another hospital and she was obviously annoyed.  She is still Meghan’s oncologist of record, but we haven’t seen her in months.

I tried an oncologist here at home.  He listened, the first visit, and the second.  On the second visit he suggested I look into having the remainder of my thyroid removed prophylactically.  He gave me the name of a surgeon and told me to go ASAP.  So, when I called to make an appointment with the surgeon and he wouldn’t see me, I called my oncologist back.  He would not get on the phone with me, and would not call the doctor on my behalf.  I was livid, but found myself an endocrine surgeon who (at least for now) advised against removing the rest of my thyroid.

When I called my oncologist back in late January to schedule my breast MRI.  I was told it was too early.  I reminded them that February marked 6 months since my last, and in fact it was right on time.  They refused to authorize the MRI until late March.  Well, we know how that turned out.  When they called me with the authorization number I laughed at the irony of the whole thing, and told them I didn’t need another appointment.

So, there was the mastectomy in March.  Great surgeons, great catch, great job.

There was the hysterectomy in May.  Again, great surgeon.  Job well done.

The surgeon in May recommended an oncologist in her practice for me.  I called to make an appointment.  I was told to fax my paperwork.  I asked if they could just look in my chart.  It is all shared between the doctors.  No, please fax it.  Ok – 39 pages later – and a huge fight with my fax machine… I got it. 

They called today to tell me the oncologist thinks I should see a geneticist instead.  Gee isn’t that ingenious?  That is how I got diagnosed to begin with.   Dope.  They will look into it and call me back.

I am starting to feel like PTEN mutation is some sort of plague.  What is WRONG with these people?

Which brings me back to my girl.  In February the surgeon(who people travel the world to see) for her AVM said that her next surgery would need to be at Boston Children’s Hospital.  They were not sure exactly when, but July was floated as a possibility.  So we went last Thursday, the 28th of June for her MRI.  After a grueling 2 hours, we left with a CD in hand, and the promise that the results would be at the NY surgeon’s office Monday.

I took the copy of the disk I had, put a cover letter on it, and sent it to the Boston surgeon we met in April, promising him a report would soon follow.

Monday I called the NY surgeon for the results.  I was told the disk hadn’t arrived.  They would call me.  I called again this morning.  I reminded the receptionist that I really was anxious about the results.  It’s on his desk she told me.  She also told me he leaves today for vacation till Monday.  I asked her to be sure someone calls me today.  I carried my cell phone ALL day. 

It’s 10:04.  I guess I will be waiting till Monday.  Really?  I know it could be worse.  It could always be worse, but enough with the lack of compassion, the inability, and lack of desire to follow through.  Enough with being scared of treating us because you don’t quite understand what we have.  Enough WAITING!

You Don’t LOOK Sick

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“You don’t look sick!”

If I had a dollar for every time someone directed that comment at my daughter or I, I would be retired – a wealthy woman.

We don’t “look” sick.  As a matter of fact we look alike.  A lot alike. It’s probably due to the fact that I, having the ‘honor’ of being the first in my family known to have the PTEN mutation that causes Cowden’s Syndrome.  To look at us, you would see a vibrant mother and daughter duo – 8 and 38.

We have a lot in common.

When I push her through Disney World in her modified wheel chair each summer, I get the stares that say “spoiled.”  When I pushed her through the Susan G. Komen Breast Cancer walk last fall so we could support my mom, a survivor, someone actually said “Why don’t you get the ten year old out of the stroller?”  Actually she is 8, and she would much rather walk.

You can’t see the AVM in her knee.  The one that has cost her 4 surgeries with an expert people travel the world to see.  You can’t know by looking at her that in February he told us he could not “fix” it.  That he was placing us under the care of another surgeon hours away.  You can’t by looking at her, see the constant swelling.  You can not see the pain.

That is because she is ALWAYS smiling.  She can work a room, and make everyone feel welcome and important.  She is a star student, reading almost 2 years above grade level.  She is friendly, and funny. (She had to get something from her DAD.)  She is confident enough to dance, and participate in storytelling contests.  (Not sure exactly WHO that comes from.)

She takes medicine for pain, medicine for anxiety, medicine for viruses that plague her, medicine for allergies, medicine for her stomach – to ease digestion.  She takes countless diet and nutritional supplements.  She follows a Gluten Free, Casein Free, Soy Free diet without a minute’s hesitation.  She is polite, and extremely well behaved.

I am so proud of her.  Last week when she was having one scan after another they called her a “model patient.”  Now I must confess when she was a baby and I was wondering what she would be good at, being a model patient wasn’t on my list of aspirations.  But since she is good at so many things, the fact that she handles her appointments in stride makes me proud, and confident that she will have the ability to stay out in front of this wretched disease.

“You don’t look sick.”

But yet, we are.  She had surgery in February for that pesky AVM.  I had a diagnosis of breast cancer in March, and a complete hysterectomy in May.  Next month we will take her to have the precancerous thyroid nodules reevaluated, and to have another scan on the knee to pin down when the next surgery will be.  Not if, but when.

With all of these ‘invisible” illnesses come worry.  It is not uncommon for me to talk to my 8 year old about if she will need a mastectomy, even before her own breasts have developed.  She asks me if she will need a hysterectomy.  A wild question, when the concept of what she will be when she grows up hasn’t even been ironed out.  But she is astute.  She knows she will likely walk my road.  She watches.  She thinks.  She asks.

So no, she doesn’t look sick.  Neither of us do, but some days reality is tougher to face than others.  Some days that happy face is a little harder to find.

So, when she woke up today after PT Thursday, kickboxing, and swimming lessons on Friday, she was sore.  Really sore. The celebrex wasn’t helping.  She couldn’t bend her knee.  I rubbed and stretched.  She was annoyed.

She is allowed to be annoyed, here in this house.  She is allowed to be discouraged and disgusted.  I have been all of those things this week, and I know its important to let them out.  I am recovering from my second surgery in less than three months.  I am tired.  I am annoyed, and aside from a few treasured folks who keep checking in, I am really really lonely.  This surgery seems to have pushed a lot of my support network over the edge.  They are a bit tired I guess.  It’s hard to be there for someone when your own life still keeps going, I know.  Especially when they don’t look sick.

So, today she had a turn.  She was discouraged about the prospect of more surgery, and disgusted that the knee seems to remain swollen.  She mourned her dream of running track.  She cried about the permanence of this disease.  She told me she wished she could get sick with something “normal” like a broken arm.  You know, something that can be “fixed.”  She sobbed out her frustration with doctors, surgeries, cancer, and the worries connected with each.  She wants to be more like her friends.   More carefree.

My heart ached as I held her.  She is a tough cookie, but we are all entitled to lose it.  I cried because I felt sad about giving this to her.  I held her tightly and told her how much I love her.  We went through a few tissues, and some long talks.  Lots of things I can tell her I understand, and then some things I can’t.  I told her she can cry.  She can be mad.  She can worry.  She just can NEVER let it win.  She can NEVER let it define who she is.  I will always be sorry she had to inherit this, but I will NEVER be sorry I have her.  She is my heart and soul.  She is my sunshine.  She saved my life.

“You don’t look sick.”

She brushed it off after a few minutes.  Back to the Ipad, and back to taking care of me.  No one outside of my husband and I will ever see her like that.  Her carefully guarded emotions will only let loose where she feels safe.  No one else will ever know her anguish, her pain, her heartache, her worry.  No one, not even our closest family members would ever guess.

I think about all those people, and their quizzical stares.  I know I can’t be too angry.  They don’t know any better.

“You don’t look sick.”

She and I are a lot alike, in so many ways.  And I wouldn’t change a thing.  We are going to be just fine.

Impersonating ME?

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I wish people would be careful who they impersonate. I am like this “big cat.” Waiting peacefully… until…

Have I mentioned the doctor and hospital bills?  Not that we need to pay them very often.  We are blessed with two solid insurance policies.  It’s the dealing with them.  When you are at appointments as often as we are ( and the COWDEN SYNDROME/ PTEN mutation seems to make sure of it!), the errors are countless.  And the HOURS on the phone…

I shouldn’t complain.  I have been home enough the last few months that I can spend hours on the phone.  But, really after a while when you are fighting so hard for your health, and many days your sanity, the incessant battles with billing departments can be draining.

And, when  I am at work – that is when I could really use a secretary, or a clone.  Either way…

The dreary weather is getting to me.  I am lonely.  I feel better, but can’t do much.  It’s nice to be home, but not with so many restrictions.  The internet is full of poison.  I can not read one more article on post menopausal weight gain.  I am only 38.  This is sometimes surreal.  Menopause… I should have at least another 15 years for that!  So, I try to be productive.

Like the bill I got for a visit to the ER when I was never there.  Yep, I was never there.  I have made no less than 15 phone calls about this since May 10th when the bill first came in.  Everyone is suspicious of me.  They have bounced me through departments.  I even got a letter from GHI saying the bill was filed electronically using my Social Security number.  (Because I needed one more worry.)  Seems to me it should be easy to trace.  If someone cared.

I just sent an Email to the general bank at the hospital.  It was 2 hours ago.  They have already asked me for more information and rerouted it to a few supervisors.  At least someone is doing something.  But me, I am waiting.  My credit scores were just printed for our mortgage last month.  They were very good.  I am  sure I need to call and request detailed reports.

Every time I go to the hospital, whether it is for my daughter or me, they want copies of the insurance cards, copies of our driver’s licenses, (mine and my husband’s) and our social security numbers.  I never give out my daughter’s – that is the one piece of information I can withhold, but they get everything else or they won’t treat.  They have that power.

What I get are the bills.  Some of them are just fun to deal with.  Like yesterday when I told the hospital that did my daughter’s last surgery that it had to be illegal to bill our primary carrier $40,000 and get payment in full, then bill our secondary carrier $25,000 and get nothing (because the bill was overpaid in their eyes) and then try to tell me I owe a $300 deductible.  Nope.  Not paying it.  The supervisor adjusted my balance to zero when I questioned their billing practices.  Surprise.

Now I have the unique job of proving I actually was NOT at a hospital when someone says I was.  It may take me all next week, but I will get it done.

Although I would like to have a chat with the poor soul who pretended to be me.  Ok my life could definitely be worse – but really, pick more carefully who you want to impersonate buddy.

I am busy here kicking the bottom of a rare disease.  I am tired, but I am a fighter.  Don’t mess with me – unless you really want to try being me.  I fight full time.  And like I said, when it’s important – I win.

“You are Special – You are 1 in 200,000”

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My daughter gave me a button for Mother’s Day.  She made it in school.  It says “You are Special” on the front, and then on the back it says “You are 1 in 200,000.”  Decorated with the obligatory hearts, she had made her point. Even in school, creating this “fun” assignment – she remembers.  I can call it “unique,” “special,” and all sorts of motherly words.  But she knows what it means.  It means different.

She and I may be the same – in many ways, but not her friends.  She can not ask her friends if their breasts hurt as they begin to develop at 8… because in reality she is different in this too.  At 8 and a half she stands just shy of 4 foot 9.  She weighs 73 pounds and wears a woman’s size 5.5 shoe.  All sorts of wild things are happening to her body and I can only pray they are not related to the Cowden’s.

The endocrinologist called it precocious puberty, and was ready to write it off.  I asked if she should start to develop close to when I did.  She said girls tend to follow the mother.  I told her then this was about 2 and a half years too early.  She said it was ok.  Then I reminded her about the Cowden’s.  The tendency toward tumors.  Can you reassure me that it is just normal development causing the breast pain I asked?  “Well if she were any other child…” 

But that’s just the point.  She is not any other child.  She is 1 in 200,000.  With an early diagnosis that is both a blessing and a curse.  She will go for blood tests on Saturday.  If her blood shows that her hormones have begun puberty – then we should be ok.  If they don’t – then we have big problems.  A new internet friend whose daughter is now 22 was diagnosed with ovarian cancer at 8.  Mom refused to accept the answer of precocious puberty without substantiating lab work.  Good thing.  It saved her little girl’s life.  I have to wonder until the blood comes in, could there be a cancer lingering somewhere in her body like there was in this other girl, feeding the hormones – tricking the world?  The thought makes me physically ill.

So after the blood tests there will be a breast sonogram, and a pelvic sonogram so the ovaries can be looked at.  There will be a test to detect bone age.  Maybe I am pushing too hard.  Maybe I am pushing just hard enough.  I won’t know, really ever.  I just have to trust my instincts.

The irony is not lost on me – that on Wednesday I will go for a complete hysterectomy – to eliminate a suspicious polyp in my uterus and some ovarian cysts, and as soon as I get word on when I can drive – I will take my baby to check on all the things I will have already lost – Breasts, uterus, ovaries.

She asks a lot of questions, my very smart 8 year old.  She asks how long before she will have to have the surgeries I have had.  I want to say, maybe never.  But I know that’s probably not realistic.  So I keep reminding her that I am 30 years older than she… she has some time (I pray.)

Tomorrow I will go to work, and I will think about her all day.  She will go to school and pretend to be just like every other third grader, as she deals with more intese grown up worries than any child should have.  She doesn’t want to be different.  But she is.  And she’s mine.  And she may very well be the best kid in the world.

Happy Mother’s Day.

Cowden’s Syndrome – I guess it’s here to stay!

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So it was a really nice doctor – or two, who said in the summer of 2011, you have to take your daughter to a genetecist.  There are too many unconnected “dots” I was told.  Someone will be able to diagnose something.  But, having gone almost 8 years with her multiple surgeries, countless doctors appointments, and unexplainable ailments, I had my doubts.  I spoke for an hour with the genetic counselor before the visit.  I think it took the doctor all of 20 minutes to say, “It’s a PTEN mutation, most likely Cowden’s Syndrome.  We will test her today.  She will be positive, and you will be too mom.”

P – what?  Cowden’s Syndrome – What the hell?  How could he know that from looking at us?  Was I missing something – some kind of freaky attributes that made us so obvious?  I left more self conscious than curious, and never even looked up PTEN – until we got the call that she was positive.  By the time they called me in for my blood test, I was sure.  I had read everything I could get my hands on.  It explained not only her surgeries, and many of her issues, but also my own.  My positive test results a few weeks later didn’t even startle me.  What did was the admonition from the doctor.  “These cancer risks are real, and you are in real danger.  You both have to be watched, but she is only 8.   You are 38.  The threats are much more severe for you.”

Processing the permanence of a genetic disorder took some time.  Ok I am lying.  I still have not fully absorbed what all of this means, and the reality that it is here to stay.  Mom was tested.  She is negative.  Little sister was tested.  She is negative.  Happy for them – truly happy.  But, what the hell?  Where did it come from, and why did I have to give it to my beautiful girl?

Diagnosis was followed by a whirlwind of tests.  First for my baby (ok she is my one and only so even at 8 she is sometimes my baby)  Brain MRI – negative.  Thryoid sonogram – positive for 4 nodules.  Biopsy – suspicious.  Transfer the slides to a new hospital – precancerous cells.  So we come back every 6 months we are told.  Kicking and screaming, I wanted more.  More reassurance that when we come back in June my little girl won’t have thyroid cancer.  There is no reassurance.  just reality, and appointments.  June 14th – tick tock.

And her AVM (Arteriovenous Malformation) that mangled web of veins and capilaries in her knee because something went wrong off the femoral artery in the leg – well we can thank Cowden’s for that too.  Four surgeries later they still can’t fix it.  Said there is a leak in the artery.  A small one they say, as if I should feel better – like the leak in a tire.  It’s slowly bleeding into the knee joint, causing its evil damage while we wait to see if the doctor 5 hours away can fix it.  Celebrex masks the pain, and a low dose of xanax puts her to sleep at night.  New images the last week in June will determine the rest of what her summer holds.

So I try not to be angry, as I read the new studies.  85% lifetime risk of breast cancer, 35% risk of thyroid cancer, 28% risk of endometrial cancer, 9% risk of colon cancer, 33% risk of kidney cancer, and 6% risk of melanoma.  Those are only the ones to be named.  The PTEN gene, responsible for Cowden’s Syndrome and a few other disorders is the tumor suppressor gene.  It regulates cell growth.  So since ours is broken- tumors grow.  Benign and malignant – they grow.  And its our job to seek them out, find them, and remove them – before they hurt us.

Vigilant is the word I use.  We remain vigilant, about every body part.  And I am watching for the both of us.  Spending hours at doctors appointments, checking.  Explaining the syndrome to doctors who have never heard of it.  What are the odds of two 1 in 200,000 conditions sitting in your office at the same time?

Saturday we go to the local endocrinologist with my daughter.  Her nipple hurts.  Really hurts to the touch.  She has already had one breast sonogram that was deemed “normal,” but how can we be sure?  Everything has to be checked.  Is it normal development?  Is it supposed to feel like that – or is there some evil tumor lurking?  I thought I was paranoid.  Actually I hoped I was paranoid, until I met a mom online whose 8 year old had stage 1 ovarian cancer.  That 8 year old is 22 now, because her mom was vigilant. 

So that same vigilance led me to the decision of prophylactic mastectomy earlier this year.  Mom is a breast cancer survivor, and I had had 7 suspicious biopsies over the last 14 years.  That’s it.  With an 85% lifetime risk, my chances were imminent.  So I went for an MRI on February 1st, just to confirm I was “clean” and had the double mastectomy with immediate implants on March 5th.

On March 13th the pathology report that was handed to me by the surgeon read “Ductal Carcinoma in Situ.”  Along with all sorts of other scary crap – I had breast cancer.  I had it, and I never knew it, and the MRI never saw it – but it was gone.  I hugged the little girl whose diagnosis saved my life.  I took a great big deep breath, and began to like those silicone implants.  One battle against Cowden’s Syndrome – won.

On May 16th I have a hysterectomy scheduled.  A forboding looking polyp found its way into my uterus.  Risk of endometrial cancer is too high to take chances.  So out it comes – all of it.  I can only hope and pray that the same results come through on pathology.  Either it was benign – or it was so contained that it is over.  No worries.  For that sigh of relief I have to wait a few more weeks.

So this is it.  Life with Cowden’s.  I won’t let it define us.  I won’t let it become who we are, but it is a definite part of us.  It factors into every decision we make.  My girl is wise beyond her years, and already asks questions like – when will I have to have my “boobs cut off?” and “will my kids have to go through this?”  Questions I can not answer, because I just don’t know.  My husband, her Daddy is a godsend – keeping the mood light and the laughs flowing.  We have no idea what tomorrow will bring, but I guess neither does anyone.

Maybe the fact that we know about this disease, about these risks, will be better in the end.  Maybe, just maybe, one day this will all make some sense.  One thing is for certain – we will stay vigilant.  That is for damn sure.