Triage- A Way of Life

Triage.  The word hangs with me like the memories of countless Emergency Room visits.

Triage. Take care of the most serious first.

It’s the reason we might wait hours for stitches, and barely a moment for a trauma.

I get it.  It makes sense in the ER.  It also makes sense on the battlefield, or in other places where there is widespread injury to be treated.

The thing is, you typically don’t stay in those places FOREVER.

Places we equate with triage are not places of comfort.  And that’s where this life with Cowden’s Syndrome can get tricky.

You see, lately I can’t shake the feeling that life is triage.  24/7/365 damage assessment, and handling the most critical first.  Vigilant.  Hyper-vigilant.  ALL.  THE.  TIME.

When you live with a chronic illness, a syndrome that causes cancer by its very definition, it is so easy to get wrapped up in monitoring and preventative care.  And then there are the times that you go for those monitoring appointments and they require their own follow-up.  This condition can easily morph into a beast that can swallow you whole.

And we’re at it times 2.

What I refuse to allow this syndrome to do is take away any more from my daughter’s life  than it has.  To the best of our ability, she will do “teenage” things, and she will do things she enjoys.

But, lately that has become quite the juggling act.

I am monitored twice a year by endocrinology (post thyroidectomy), my breast surgeons, and dermatology.  I am monitored annually by gyn oncology, and oncology.  This is post-bilateral mastectomy (stage 1 DCIS) and post hysterectomy.  I am monitored every 5 years for colonoscopy.  I am also monitored with abdominal ultrasounds for 4 hamartomas on my spleen, and a cyst on my kidney.  This may not seem all that impressive, but those are just the appointments if everything goes well.  That’s not additional scanning, blood work and biopsies.  None of them are close to home either.

Not to mention, I am still searching for a local primary care doctor.  In addition, there is dental work, both routine, and the emergencies the stress from grinding my teeth keep causing.  I’ve been referred to another oncologist who specializes in genetic diseases, and I need to get in to see her.  I just completed vascular surgery, with its pre and post op appointments and recovery as well.

That’s just me.  Me, and my full-time job.  And, like every mother, my needs are not the most important.

My girl sees endocrinology twice a year.  She is still, 4 years post-op, trying to get thyroid function balanced.  She sees gastroenterology, and dermatology twice a year.  She also sees an adolescent gyn twice a year, courtesy of precancerous tissue already uncovered in her teenage uterus.  She sees a chiropractor every 2-3 weeks for pain management.  Right now, amid diagnosis of the small brain tumors, she is seeing neurology every three months for new MRI scans.  She sees orthopedics every 8 weeks.  They have been monitoring her knee for years, and recently stubborn tendonitis in the shoulder.  There have been a few MRIs of late.  She has seen physical therapy weekly since the fall, and is now working on twice a week.

She is tired.  Partially because of her schedule, and partially because of her sleep patterns.  Despite a regular bed time, she struggles to get quality sleep.  It is hard to turn her brain off, and for her to get rest.

She has developed Post Traumatic Stress Disorder (PTSD) and anxiety, secondary to consistent medical trauma.  She is working through it – but, like everything else, it is a great deal of work.

She is awaiting word that her service dog is ready.  The call could come any time in the next 6 or so months, but we are hopeful this dog will help her through what can be some trying times.

She is an honor student.  She is a swimmer – at least 5 days a week, for 12-15 hours a week.  She is in weekly vocal lessons, and a theater group that meets 3.5 hours a week.  She enjoys a local church youth groups.

She has food allergies – restricted from dairy, gluten and soy.  And seasonal allergies to all things pollen.

None of this includes normal things.  Like dentist and orthodontist visits, or even haircuts.

It is easy to get isolated.

She has a strong sense of what is right and wrong, and can be rigid in her perceptions.  But, life has shown her things most adults, let alone people her age, have ever seen.   Just as that strong mindedness flusters me, I refuse to try to break it down.  It is that same will that has gotten us where we are.

And where we are, is in TRIAGE.

My iphone calendar is with me everywhere.  I prioritize swim and theater over doctors when I can.  Physical Therapy is a high on the list right now for pain management and strengthening.

Vocal lessons keep her going, as she can sing herself through a lot of stress.  Theater is just a fun group of children, and I am not willing to sacrifice that.

I have a list by my desk of “next up” appointments, and because our availability is so limited, I am often booking months out.  We travel to most – NYC or LI.  Short on miles – but up to 2 hours each way – often.

We stack them when we can.  Two appointments are a bonus, three is a banner day.

And every year about this time I dream of a summer light on appointments.  I’ve yet to see it come true.  Truth be told, almost every school holiday and every vacation is cluttered with things we need to do, but would rather not.

There is a blessing in knowing what we are fighting.  There is blessing in having a warning system in place.  But, there are still some days when I’m totally overwhelmed that I wish I didn’t know so much.

Triage.

Triage means that right now the physical and emotional health of my teenager trumps all.

So she swims 5 days.  We do PT 1-2 nights after swim. We see “other” doctors midweek on the one day there is no swim.  We do voice, and theater on Saturday.

I make my appointments on weekends when my husband can drive.  I make my appointments a year out so I can stack three in one day in the summer and on February break.  I schedule our surgeries for February of Easter vacation when I can.

I plan our fundraiser now for October, so as not to give it up, but in hopes of finding an easier time.

I research at night.  There is always a need to learn what most of our doctors do not know.

I write, when I can.  I love it and I miss it, but time just doesn’t seem to allow.

Hair, nails, eyebrows, and things I used to enjoy are forced into holes in the calendar, every once in a while.

Dust builds in places I never used to allow it.

Friends, well I have to trust they get it and they’ll be around when there is a change in the current status of things.  I miss them.

Triage.

It starts early in the morning, waking up a teen who just hasn’t slept well.

It continues through the day – my job and her school.

After school is all about making it work.  Swim, PT, or whatever therapy the night brings.

There are often phone calls, requests for lab reports, or battles about IEP needs…  Emails go through the iphone.

Usually we are out of the house about 13 hours.

At night we pack everything so that we can be ready to begin again.

Triage.

Most critical right now is allowing my teenager to find her way, in school, in sports, and in her life.  Most critical is giving her very real scenarios where her disease does not define her, and she is able to achieve in spite of her challenges, not because of them.

In order to make this happen, everything revolves around her schedule.  There are opinions about that in all directions.  There are people who would tell me I am creating an entitled, self-absorbed human.  I don’t pay them much mind, because they haven’t met her.

When I signed in to be a parent I knew I’d be all in.  I just never saw THIS coming.

Balance needs to always be in place, where the physical needs of either of us are never overlooked.  However, non-essential appointments CAN, and WILL be scheduled around our availability.  She will be a happier, and more tolerant patient when she didn’t miss something she loved with three hours in traffic and two in the waiting room.

Triage is meant to be something you experience briefly in times of crisis.

The “fight or flight” response is not always supposed to be on.

But it is.

At this time in our lives we may not always make for stellar company, although ironically, we’d love to have more of it.

At this time, we may say no constantly, to the point where you stop inviting.  Trust me.  We’d rather go.  We actually enjoy your company.

At this time, we are so busy surviving, and taking care of the most critical needs, that anything not immediately essential gets passed by.

We are constantly evaluating order of events, but TRIAGE is fluid by definition.  Unfortunately there are so many situations and scenarios, it is hard to see through them all.

Even at our toughest times.  Even at our most overwhelmed days.  We can look around and find our blessings.  They exist in big things, like being able to physically attend 5 practices a week, and little things, like being able to WALK around the school without hesitation or assistance.

We are aware of those suffering illnesses far beyond our grasp.  We are aware and we are grateful for the health we do have.

We are also tired.  And lonely.  And often overwhelmed.  We also know this is the way the plan must go for now.  And one day it may change.

Triage is fluid.

Life is fluid.

We all do the best we can with what we have where we are.

And we remain steadfast

#beatingcowdens.

 

 

Snow Boots

The winter boots are still in the closet.

It’s June 12th.

Actually Meghan’s room has a basket of winter boots that are not only off-season, but are too small for her.

It’s June 12th, and that is definitely a new record for me.

june12

In my old life clothes got changed systematically in April, and early October.  Jackets got washed, shoes got put away.

That was my old life.  I don’t remember it much.

I don’t really have a big closet.  The spring shoes are upstairs in the hallway.  All over the floor.  I’ve been getting one pair at a time as I need them, but if I don’t hurry and make the switch soon winter shoes will take over my bedroom floor.

Thankfully, Mother Nature seems confused about the season.  That is buying me some time.

Mother-Nature

In my old life, nothing was really on the floor – ever.

We went to the doctor today.  Shocking news really, I know.

We went to the doctor today in hopes of replacing the endocrinologist with someone more open-minded, and “outside the box.”

EPIC FAIL.

What we got instead was a closed box, closed-minded,”I won’t take on your kid, so stay where you are” doctor, in a really bad suit.  (And I’m not much about fashion – so you know it was a REALLY bad suit.)

I had lots of time to look at her, and the suit while I used my hand to keep my mouth from spilling out my actual thoughts and embarrassing my daughter.

I brought the 3 page synopsis of tests, hospitalizations, and medications.

I brought the 3 INCH binder full of lab tests and pathology reports.

I brought the CD of the neck sonogram.

She glanced at her most recent blood work.  She told me her TSH was too high.  She told me she needed more Synthroid.  She told me her current team was just fine.  Then she told me twice they were better suited to treat a Cowden’s Syndrome patient than she.  Feel like a leper much?

I asked all sorts of questions.  I asked about T3, and potential problems with synthetic absorption.  I reminded her that in addition to PTEN she has an MTHFR mutation which impacts her ability to process B12.  I asked if there could be anything else she has trouble processing. (Hint Hint… synthetic thyroid hormone?)

“You’re very smart,” she tells me.  “You know a lot,” she says.  Yet, she deflects my questions like a goalie with a hockey puck.

Hockey-Stick-and-Puck-Photographic-Print-C11950881

News flash.  I don’t need stroking – just answers.

But I watch my tongue.  And I watch my tone, because my daughter is watching my every move, my body language, my attitude.  She is using my response to gauge whether she needs to be uptight.

I asked what was the upper limit for synthroid.  I was told there was none.  I was told that the dose would just continue to be increased.  I was told she would likely reach .200 mcg.  I expressed concern.  I was told not to worry.  The body only absorbs a percentage of the synthetics.  Um, that would be the point of my worry.  She doesn’t have a good history of secreting junk.

I got a lesson on the pituitary and the up and down regulation of TSH.  I was told when to dose the medicine.  I reminded her I have been on thyroid replacement for 27 years.

She asked me if she had answered all my questions.  In my old life I might have politely said, “yes.”  But, this is not my old life.  I smiled, shook her hand, and said “No, actually you didn’t, but I don’t think you know the answers.”  Then we left.

In my old life things were neater, and more orderly in every aspect.  Sometimes I miss the order.  But not for long.  There is nothing orderly about this kid, except her behavior (98% of the time,) and I am learning to embrace the chaos.

She woke this morning feeling like real crap.  Exhausted from swim practice (she made it almost through) and fifth grade trip yesterday.  She hurts.  She is mellow.  She has fun with the kids, but she’s not herself.

Maybe it will just take time, but hours and weeks and months of childhood seem to be ticking away.

I pushed her today to start making dates with friends for the summer.  Her friend’s parents must think I am weird.

It’s as important, or MORE important to plan pay time as it is to plan doctor’s appointments – for so many reasons.  And since we have so many appointments, I want to start with the friend time – NOW.

We live in the middle of New York City.  One would think finding pediatric endocrinology in the mood for a challenge would be much simpler than this.  Instead I am left to return to the surgeon on Monday, so he can validate himself by telling me he doesn’t feel anything in her neck.  And then, back to see the resident of her endocrinologist in July.  (The actual doctor takes off February, July and August – so he has yet to see her since the surgery.)

Life is not ours to plan.  But, we have to try to schedule the fun stuff before the days get away.

We RSVP while holding our breath.

There is more “One day at a time…” than I have ever known.

one day at a time

Maybe there will be some time to get those snow boots away.  In the mean time, if you do stop by- don’t judge the hallway.  Or the closet.  Or the dog fur.

I took a walk yesterday, and another one today.  I listened to music.  It’s a slow process, but I am working on my emotional health.

It seems to be the only thing I can control.

I am working on those foundation stones for Meghan’s bridge.

And in the mean time, if you happen to need any snow boots – I can get them for you in a hurry.  I know exactly where they are.

snow boots2

 

 

Building Bridges…

It’s been a while since I’ve written.  If I have my way I’m about to get so focused that you’ll get tired of hearing from me.

Life has become a bit overwhelming.  And some days all of this, this whole chronic illness thing, is just too much to handle.

There are days the path looks like this.

broken bridgeThere are days when it is easy to wonder, “What now?”  or, “What next?”

But that is the very mindset that can find us in a heap of trouble.

So we are trying to work on shifting our focus.  Instead of panicking when the bottom feels like it’s falling out, we are working on reinforcing the structure.

We all need a bridge, a support system of sorts.

With two members of the house who are the 1 in 200,000 unique that comes with having a RARE Disease like Cowden’s Syndrome, it’s so easy to let the illness try to creep into your identity.

I don’t talk too much about me.  Mostly because as any Mom, my needs are second to those of my girl.  But, I too get overwhelmed.  And when I feel like Cowden’s is trying to choke me out – it’s time to pause and reclaim.

I am more than the paperwork and medical records.  I am more than the bills and prescriptions.  I am more than the scheduling and the appointments.  I am more than the mastectomy scars.  I am more than the synthetic thyroid hormone.

I am a mom.

hope stone

I am a wife.

hope stone

I am a friend.

hope stone

I am a Christian.

hope stone

I am a teacher.

hope stone

 I like music.  I like reading John Grisham. I enjoy Law and Order.  I like to laugh.  I CAN’T get by without my Isagenix, and my Ionix.  I appreciate photography, and I really, really like to sleep.

And with each piece of my identity, the pieces of my foundation get stronger.

 

There are things I have to do as a person with Cowden’s Syndrome.  There are things I have to endure.  There are an unnerving amount of tests and appointments and the constant nagging notion that things may spin out on a dime.  But if I am honest – isn’t that what life really is – for everyone?  While the issues may not always be medical, the reality is that despite our best efforts, we have no control.  So, we do “the best we can with what we have where we are.”

And as I get my foundation in place.  As my stones are strategically placed – so they can be stepping stones along the way if needed, I can work on helping Meghan build her bridge.

wooden bridge

I figure once I have it together enough that I can catch her if she falls… she’s free to establish her own pace, and find her own way.

We will forever do outreach work.  We will forever share our story.  We will forever create fund-raising opportunities for research.  That will be part of our lives.  Cowden’s Syndrome will be part of our lives.  But it will not BE our lives.

My daughter has seen more in 10 and a half years than most adults see in a life time.  She has been medically poked, prodded, and cut.  She has been in and out of hospitals.  She has seen doctors hired and fired.  She has been listened to and she has been ignored.  She has had arteries ablated, and a body parts removed.  She has vomited pure bile from a stomach torn apart from pain medicine.  And she has pushed each day through that pain.  She tries to be like the other fifth graders, but she struggles.  She struggles to be understood and to fit in.

But, from my stones, my own developing identity,  I can see her clearly.  Perhaps more clearly than she sees herself some days.

I don’t profess to know all things.  She’s a bright preteen.  There are things I’ll never know, and that in and of itself is OK, and normal, and even healthy.

What I see when I look at Meghan is not Cowden’s Syndrome.

I see a beautiful smile.  I see a kind heart.  I see compassion.  I see love.  I see competitiveness.  I see a swimmer.  I see a singer.  I see a reader.  I see someone who loves to play hard, and relax just as hard.  I see raw determination.  I see high standards.  I see someone, a young woman who makes me proud to be her mom.

This summer we are going to work on building.  I want to be able to provide her stepping-stones.  And then I want to help her build her bridge, with a healthy mix of guidance and independence.

I want her to see she has Cowden’s Syndrome, but it does not have her.  It is an inconvenient part of our lives – but not our entire lives.

We are going to make memories.  We are going to create situations that have nothing to do with doctors or hospitals.  We are going to laugh and play.  We are going to continue to “Live Deliberately.”

And we are going to write it down.  It sounds so silly to think that we have to write down having time for fun, but we do – for now.  Maybe one day it will become so automatic that life’s adventures will become common, and our medical world will fit in the empty spaces.

It’s not going to happen all at once.  There will be days we have to remind each other.  But, we will get there.

And along the way we will slowly build the team of medical professionals who look at us as people, and keep our best interests at the forefront of their practice.

Because as we become empowered, we will be rid of the others.  Positive influences only.  We deserve that.

She made swim practice tonight.  No small feat.

The pain – evident, but managed.

applause

Endocrinology consult Thursday.

Hopeful.

A balanced thyroid certainly would help a few (dozen) things…

 

Recovery – phase 3 = HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

At the end of the day… quite literally if you go by our arrival time last night… I guess all that really matters is that your little girl went through the surgery successfully and you get to arrive home, as a family to sleep in your own bed.

That’s why I refrained from saying too much in the midst of my Mamma Bear Rage last night.

mama bear

Because sometimes you need to sleep, and think carefully before you type.

The surgery went smoothly.  The surgeon did a fine job, and so did his team.  It was not their fault we were delayed by hours.  Someone else’s baby needed their attention.  And I can respect that.  He followed up personally, listened to Meghan, was cautious but not paranoid.  His attention is to the surgical incision. The follow up care needs to be guided by endocrinology.

Meghan’s largest discomfort, aside from the sliced neck muscles, appears to come from the “durabond” glue used to hold the incision together.  Things on her skin – even band-aids annoy her.  This is making it feel extra tight (doing its job,) and is making breathing and eating uncomfortable.

But we traveled to the hospital with our gluten, dairy, soy free cooler, and she was progressing on pretzels and our ginger ale, mixed in with a little “Ever Roast Chicken Breast.”  By the early afternoon she looked better.  The surgeon said to watch her till 5.  A fair number considering she didn’t hit recovery until 7 PM the night before.  If she was still good at 5 PM he would clear her to go.

And then there was endocrinology.  Perhaps spearheaded by the fact that Meghan’s endocrinologist is on vacation for all of January and February, or maybe just a poor information sharing structure, things fell apart at endocrinology.

When the thyroid comes out there is always the risk of surgical damage to the 4 small parathyroid glands that help regulate thyroid function.  That being said, even when they aren’t damaged, they are often traumatized for a bit.  Low blood calcium is OK for a few hours, but not a few days.  Like everything else, the body needs all things working together for smooth operation.  Originally it was explained to us, that it was not uncommon for the calcium to dip after surgery then recover.  They had to just see if it tanked out.  The decisions for her post op supplementation would be made based on these blood results.

So, she had blood drawn at midnight after surgery.  Then there was the draw at 1 AM for blood sugar.  Then there was a draw at noon.  Later in the afternoon one of the doctors/residents spoke as if Meghan had received a dose of calcium (2 pills and a liquid) prior to the blood draw.  I insisted that was not the case.  Then we were told the blood had to be redrawn at 6 PM and would be read at 7PM so discharge orders could be accurate.

Well, at 6:45 when I hunted someone down for the blood draw, again I thought it odd that the  calcium – that was supposed to be there before the noon draw, showed up 30 minutes AFTER the 6:45 draw.  I waited until 8PM and started hunting down results.  I was told that the ionized calcium had dropped from 4.8 to 4.3.  I picked up my copy to show them the midnight draw was at 4.8 and the noon draw was at 4.3,  Apparently the 6PM draw held at 4.3  There were two other tests, and I wanted the numbers.

Run around.  Run around.  Run around.  Finally after much work and some heated conversations we got the numbers from the other 6:45 tests.  The calcium held their own, indicating a drop off to be unlikely.

Originally we were told she had to stay overnight for a 1 AM and 7 AM blood draw.  Then we were told that since the labs were drawn with NO supplementation. ( I brought THAT to their attention) and she still did OK, that NO blood draws were ordered for one week.  NOTHING overnight.

Now it was after 10.

The day nurse, who was grossly overworked, and contrite and apologetic had missed the order for the calcium.  At least I was able to respect that she apologized right to  my daughter for muddying up the entire process and raising her anxiety.

The resident – 1st year who left because I was asking too many questions, and declared himself “off duty,” is the miniature version of why our medical system fails us.

The passing of the buck that took place around the endocrinology department – disgusting.

And this is the clean version.

Facilities.  Doctors.  People.  Can rest on reputations previously earned.  And then one feeds into another and that reputation carries them – sometimes too far.

We have been there, and done that.  And we are far from done.  So loyalty lies in individual treatment and care by individual doctors and nurses.  There is no one perfect facility.  There is no one perfect place.  Not even in Manhattan.

We gathered our things quickly.

We were in the car at 10:45PM.

My wise daughter asked what the lesson learned.

I said,”Trust your Mom.”

My husband said, “Educate yourself.  Advocate for yourself.”

I guess we are both right.

The ride home was tough.  Painful.  You use your neck for an awful lot of things.

But we got home in time to give her a well deserved Valentine’s Day Gift

Alex and ANI hero front

Alex and ANI hero back

She certainly is our Hero.  And as we travel down the road to recovery again – a road she is exceptionally good at – I hope she remembers both lessons from the car ride last night.  Especially the one to “Trust your Mother.”  For now I can be the advocate.  She has to find some time to be the kid.

Valentine's Day 2004 - our first hospital stay.
Valentine’s Day 2004 – our first hospital stay.
Valentine's Day 10 years later...
Valentine’s Day 10 years later…

You Can’t Have a Rainbow Without a Little Rain

rainbow rain

As a young child a can remember hearing stories of rainbows in Sunday School.

This week I needed lots of reminders that I am not alone.  God keeps His promises.

Yesterday we saw Endocrinology at MSKCC in NYC.  They spent an hour and ten minutes preforming a detailed sonogram of Meghan’s thyroid.  She was an angel – calm and patient.  I watched the whole thing, uncomfortable with how much I am able to see on an ultrasound now.  The things we learn through repetition.

It was obvious to me that the many nodules – well over 10 – are still there.  At least three are quite large.  I watched as they were measured, and my “numbers” brain frantically tried to recall the stats from December that had led us to January’s biopsy.

We spent an hour waiting on the ninth floor, the pediatric cancer unit.  And as I have said before, and I will say again, if you ever need to count your blessings, I mean truly count them, I strongly suggest you swing by there.

rainbow not thunderstorm

Meghan played on her iPad as I watched.  Chemo pumps beeping.  Children from 2 to 20, some seasoned veterans, some terrified newcomers, attached as the poison to kill the evil cells drips into their body.  Some sleeping, some resting, some running.  And their parents. Dark eyes.  Worry.  Terror.  Fake smiles.  Bitten up coffee cups.  “Count your many blessings count them one by one…”

“Mom, I am not scared of thyroid cancer.  I am only scared if they don’t catch it early enough.”  I knew what she meant. She went back to playing.

In the doctor’s office there was a moment for us to be relieved, kind of.  The nodules are slightly larger, but are growing slowly.  They are still in that same “precancerous” state, but we are not in imminent danger.  No biopsy right now.  We get at  least another 6 months out of the thyroid.

Then there were the other conversations.  The ones about hormone levels that won’t regulate on lab work.  The MRI that showed a pituitary “diminutive in size.”  The inconsistencies of these tests with her current development.  The statement from the endocrinologist that this lab test (having already been repeated 4 times,) “defies human physiology.”

Yeah, and…

So he drew the labs again.  This time at “his” lab.  And a thyroid panel, and a few other things.

He’ll call me Monday.  Then I will find out more about “human physiology.”

At swim practice last night I met a mom.  She has an only child too, just about Meghan’s age.  And she is BRCA positive. So, after a day of doctors, somehow we were placed in each other’s path last night.  And, I had conversations with a virtual stranger that I probably haven’t had with some of my closest friends.  There are no coincidences.  Of this I am sure.

And this morning – barely able to move from stress and fatigue, salivating for a day of “vacation,”  we dragged ourselves out of bed again.

rainbow snoopy

I packed the bags – always bringing lunch and a few snacks, and we headed out – a little later than I wanted.  As I crossed the bridge I had the sinking feeling that I didn’t have my wallet.  Back across the bridge.  Back home.  Back out.  An accident on the FDR assured me that I couldn’t use the $14 parking coupon I had printed.  Into the $42 lot we went. We made it into the office at 10:03.

The vascular surgeon is uptown.  He has been inside of Meghan’s knee 4 times, so he knows her well.  This time we had less overall pain to report.  But, of course he never felt the pain was connected to the AVM anyway.  So I recounted tales from her PT evaluator, and her swim instructor about how difficult it is for her to run without limping, or to push off to start a race from the block  I had his attention.  The legs have different girth.  The left is undoubtedly stronger then the right, having been spared the AVM.  Do you take her for PT he asked?  Um… constantly.

Fortunately we love Dr. Jill!

We took her out of soccer and dance and put her in swimming.  There isn’t much else we can do.

Oh, and could you look at her wrist?  The one she hurt at the school carnival almost 4 weeks ago.  She was victorious at her quest to climb the rock wall.  Stubborn, competitive child.  But has paid the price since.

For a few days I told her to suck it up.  I admit it.  But it kept going.  Knowing Meghan as I do, she will keep me abreast of every pain – but the SECOND it stops, its like it never happened.  This one wasn’t quitting.  Dr. Jill helped us.  We tried a brace. Then another one.  Then no brace.  No better.

So as I watched the doctor manipulate her wrist I couldn’t help but remember my frustration the day after the carnival, when all of her friends walked around unscathed, and she suffered terribly with pain all over.  I remember thinking how cruel it was that she had to make a conscious decision to suffer in agony the next day – if she wanted to keep up with her friends.

He examined it for what seemed like forever.  Then he asked me who my orthopedist was.  I laughed out loud.  The one subspecialty we have NOT found – is pediatric orthopedics.  So he asked if she had a rheumatologist.  I said we were headed there July 9th.  He said try to move it up, and call him after I saw her.  She needs and MRI of that wrist.

“I don’t think it’s vascular…”  And after that we will get one of the knee – just to be safe.

There went two more days off the summer calendar.

40 blocks away was the geneticist.  He is the one we credit with saving my life.  And I credit the angels with placing him in our path two years ago.

We spoke at length.  He has more questions.  More research.  He has a theory.  He will call me.  He will send me the articles.  The conversation lasted an hour.  He is brilliant.

She hugged him and told him she wants to be a geneticist.  We have a friend for life.

The people training on the  new teacher evaluation system in NYC frequently declare “This is going to create more questions than answers.”  I don’t know why I find the system to be perplexing.  I should be used to it by now.

It rained tonight.  Thundershowers.  They have been happening a lot lately.  Maybe I need a lot of reminding.  The rainbows are there.  The promise remains.  Nothing happens by accident.  God’s timing is perfect.

6/28/13
6/28/13

6 Months…

June 18, 2012

As I was receiving the news of my grandfather’s passing, I mean within moments, my cell phone rang.

It was the endocrinologist we had seen the Thursday prior about the thyroid.  It was hard to wrap my head around the conversation at first, but I was struck by the reality that this is it.  This is how life will always be.  Life won’t stop for the doctor’s appointments and test results, and the appointments won’t stop for life.  So somehow, we need to find a way for them to get along, and exist – simultaneously.

The thyroid sonogram had been done on the 14th.  When we left him that day he was comfortable waiting a year for the ultrasound, and just seeing her in 6 months.  He told me he would call me after he compared her November 2011 sonogram CD to the new one.

So I stopped in the hallway at my school.  Tears were still streaming down my face as I composed myself enough to talk to the doctor.

He reviewed the older images and compared them.  There are a lot more nodules, he didn’t even give me a number, and most of them are very small.  However, there is one a bit bigger than all the others.  He would like to keep an eye on that one.

Instead of a sonogram in a year, we got bumped back to 6 months.  Doctors seem to like to treat us, patients with Cowden’s Syndrome, in 6 month increments.  Now if I can just figure out a way to synchronize them so we are not ALWAYS scanning something…

So, the last time we were there they told us to prepare.  She will have thyroid cancer I was told.  Until then, they will just watch.  December 27th it is then.

Even as I continue to wonder if all these thyroid nodules couldn’t be provoking this puberty, setting off a way too early growth cycle, I knew I wasn’t going to get an answer.  At least not today.

So, I closed the phone and dried my eyes.  One day the thyroid will turn, but it’s not today.  Not now.  At least we can have the week to bury Grandpa in peace.