Groundhog Day

“Groundhog Day” – who doesn’t remember the movie?  There have been plenty of days I have thought of it.  I may need to watch it again soon.

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Pediatric Endocrinology is a ridiculously small sub specialty.

There is this web of interconnections, and all sorts of people who have lost sight of the patient.

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Ultimately I may need to head out-of-state to try to get a clean opinion.  But, I have to take that and so many other things one step at a time.

But, after the travesty on Thursday, I was left with little choice but to keep me appointment with the surgeon at our current hospital.

You remember the surgeon?

He’s the one who did a great job on the surgery.  The one who said, when we went for the follow-up, that he only needed to see her ever again if she felt anything in her neck.  And when she did feel something in her neck I had to jump through 12 hoops to convince him he should see her.  And then when he saw her, he proclaimed the lump a salivary gland and told us to return “one more time” in a few weeks.

But then there was that horrendous week in the hospital.  And while she was being treated for gastritis, a hematologist felt her neck and said, “It’s a lymph node.”  So they sent her for a sonogram which said it was a lymph node.

So when we went back to see the surgeon and brought him the sonogram report he got annoyed and ordered his own ultrasound, which we got to wait 3 hours for.  And then he called me to tell me everything was fine, even after the 45 minute exam where the tech measured the lymph node in her neck.  So we were good to part ways until I asked for a copy of that report too.

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And 10 minutes later my cell phone rang telling me doctor “I am sure it’s fine, but just in case,” wanted to see her again.  So after some haggling we arranged for June 16th at 1.  Which was ok.  Until they called me Friday to tell me I could come in at 9:30 or 10:45.  “How about 1, like you said originally?”

So the appointment was set for 1, and I punched out of work at 12.  We got to the hospital at exactly 1 (a 20 mile drive) after some typical traffic, and a near miss of a three car accident in front of us on the highway (thank you angels) on line for the parking garage.  I called up to let them know we’d be a few minutes.  And we sat.  And we sat  And we sat.

Finally we began to inch forward just a bit.  Then there was just one car in front of me.

And he was not paying a bit of attention, as a large black SUV cut right into the front of the line.

Now at times like this I try to focus.  Maybe there was a medical emergency. Maybe… Maybe…

So as much as I wanted to get out of my car screaming, I held my composure and talked about all the reasons they might have done that.  Until a hospital employee, likely late for work, surfaced as the driver.  He left his car across the sidewalk, took the ticket from the attendant and raced into the hospital.

It was 1:35.

And then I noticed some scurrying.

I thought the car was stuck.

It turns out the self-important line cutter had taken his keys- blocking the entrance and causing the line of 20 cars behind me to continue to grow.

The car was booted and moved.

We got to the appointment around 2.

As usual...
As usual…

The doctor spoke to Meghan.  He asked her how she was doing.  She told him about her pain.  And about her throat clearing.  And about how tired she is.  She mentioned working hard to get so swim practice.

I don’t think he heard a word.

He felt her neck and proudly proclaimed he felt nothing.  By now I was so tired of this I just wanted to get out.  I figured we were done.  I was glad he could feel nothing.  If only I trusted him.  Truth be told, I haven’t put a hand on her neck in 4 weeks.  There is just no point.

“I want to see her at the end of the summer.”

WHAT?????????????????????????????????????????????????????????????????????????????????????????????????????????????????

3 visits ago he never wanted to see her again.  Now he has ultrasound and 2 visits at which he told me she was fine.  Let it go.  Unless of course, he just doesn’t quite trust himself…

“I’m glad she’s feeling so well.”

EXCUSE ME??????????  Did you just see MY kid?  Because MY KID is incredibly polite, and often very positive.  She is articulate and bright, but she will NEVER tell you she feels WELL.  She doesn’t believe in lying.

Some days this is like a bad movie. Or a dream where your finger is stuck in the door and it keeps closing over, and over, and over again.

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August 18th.

Damn.

So much for a month without doctors.

When do you, as the Mom, put an end to it?  Knowing that any “miss” falls right on you, it’s so hard to defy their recommendations, even when their competence can be questioned.

Rheumatology on the 30th.  GI on July 2nd, and Pediatric Endocrinology AGAIN on July 3rd.  And that’s just the first week.

I guess I better plan something fun for the 1st.  Something worthy of a stepping stone for that bridge…

Her entire right side hurts to the touch tonight.  Every natural pain remedy I research has something her reflux doesn’t allow.

She fell asleep tonight reading her Bible.  Our Pastor sent her a long letter with some great verses of comfort.  She hasn’t stopped rereading it.

Sigh…

Two hours to get in.  Two hours to get home.  Less than 30 minutes on the floor of the hospital.

“This is getting old Mom.”  Wise kid.

“‘Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise” – Laura Story

The Arrogance Epidemic

arrogance3

Truly. Under diagnosed, and under treated. Spreading wildly. Seems especially prevalent among experienced medical professionals.

Not all are affected. Some are immune. Some resist with all their might.

Some embrace the arrogance. They seem to enjoy spreading it to those around them.

Others hide the arrogance, carefully and efficiently. Until the moment they are challenged. Then they unleash the beast full force.

arrogance

We met again with the thyroid surgeon today. Two weeks ago we requested an appointment because Meghan felt something in her neck. I have learned from experience not to question Meghan. She has proven time and again to have an awareness if her body that defies explanation.

Two weeks ago he felt her neck and declared the lump she felt to be a salivary gland. He said some small lymph nodes surrounded it, but when we came back in two weeks it would all be gone. He said it with a good amount of authority- but not arrogance. He reminded us of her clean pathology report. He directed us not to worry.

And maybe we would have paid it no mind, except that’s not how life tends to go around here.

So, three days after the surgeon declared the “salivary gland” in her neck, we ended up inpatient at a local hospital with an attack of what ended up being severe gastritis.

While they were sorting themselves out, the pediatrician (who is as far from arrogant as they come,) remembered feeling the neck a few days prior. He had deemed it a lymph node, and figured while we were there he’d have a colleague, a hematologist/oncologist give it a feel. She deemed it a lymph node too and sent Meghan for ultrasound.

Just sitting around the hospital with tons of time as they tried to figure out the root cause of the GI pain, we were amenable to a neck ultrasound.

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Now I am not taking sides- I have experienced great sonograms and horrendous ones- and witnessed them- in the best and worst locations. So I take reports as point of information, and never shun clarification. But this one clearly said lymph node- almost 2cm. Subsequent blood test ruled out the salivary gland theory as well.

So Thursday, after we were discharged I contacted the surgeon’s office. We had an appointment today, Monday the 19th. I spoke to the staff. I sent the ultrasound report. I asked them to schedule a sonogram at their facility for us to compare the one we just received. I figured we’d see the doctor and then have the sonogram.

Except as we entered the exam room he was agitated. Looking at the ultrasound report clearly for the first time, he said,”this must have been taken before the surgery.” Seeing it was Meghan’s report I interjected- “No it was taken Thursday the 8th.”

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Enter arrogance. I swear his whole demeanor changed and it was like the arrogance bubbled up from his toes.

Now I will be honest- I don’t have a history of playing nice in the sandbox when I am pissed, and I don’t do arrogant well.

So, I may not have been the sweetest. But two weeks ago he was very concerned if she’d had fever, or vomiting. He made it a point to weigh her. Now- she spent 6 days in the hospital and no scale? Somehow I let that go.

What I couldn’t let go was his statement that there was nothing in her neck that was enlarged. See, you can tell me there is nothing to WORRY about. That I will take happily. But you can’t tell me nothing is there. Because 2 doctors an ultrasound my daughter and my own fingers tell me there is.

So we’ll get an ultrasound and then I’ll call you tomorrow to tell you nothing is wrong.

From your arrogant lips to God’s gentle ears…

So they had the girl, who just made her way back to school after a week in the hospital wait for three hours. We made it home around 7.

I know the treatment for arrogance when it overtakes common sense. Time to be done with it. A new consult has been established but we wait- so as not to cut off the nose to spite the face…

In the mean time I know we are not the only ones. There are so many good medical professionals. There are so many who take the time to think, and care, and treat. And then there are others.

The problem with Cowden’s Syndrome is the sheer numbers of doctors we see. The problem is hard to avoid.

Plus- as my grandfather once told me- I can be a little difficult to work with.

It’s all about my girl and whatever she needs….

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Passing time….

So here we sit.  Again.  For the second time post thyroidectomy, we are in the hospital. meg hospital May   The girl doesn’t feel well.  She just doesn’t.  End of story.  But, not too many people seem ready to listen until she’s in a full on physical crisis.  Even then sometimes the numbers are frighteningly low. Yesterday she knew.  She NEVER tells me to stay home from work.  She KNEW.  And my pediatrician heard it in my voice.  She was admitted soon after he saw her.  He wanted it to be the flu.  In some ways I did too.  A little Tamiflu and some rest.  Buts she’s negative for flu.  No real surprise.  Too simple a diagnosis for my girl. Since her surgery in February,  her TSH (Thyroid Stimulating Hormone) which is supposed to rest somewhere between 4. and 4.0 has been lingering well over 10, despite numerous medication adjustments. The TSH is supposed to be down regulated when the synthetic thyroid hormone takes the place of the T4 and T3.  Enough thyroid hormone and the TSH decreases.  Not enough and it increases causing hypo (under active) thyroid symptoms which can range from bone crushing fatigue, to generally feeling unwell and a whole host of issues in between. He medication has been adjusted upward with no effect – several times. I know it takes time.  I barely remember my own battle with thyroid hormones over 20 years ago.  The veterans of this surgery tell me 6 months, a year…  I get it.  I do. But then there is the reality of watching your kid feel crappy every day.  The reality of watching her FIGHT with all her might to do the normal things others take so easily for granted.  And then I get impatient. impatient smiley To complicate things it may not just be the thyroid hormones keeping us hopping. That “lymph node” turned “salivary gland” is now back to a lymph node in the neck.  We are awaiting the ultrasound that I feel should have been done with her appointment last Monday. And there is a fever.  She never gets fever.  Not really.  And yesterday it was 102.  Today around 100.  No answer why.  Not even the White Blood Cell Count gave a clear indicator. And the reflux.  Painful.  Like fire. Lack of desire to eat much of anything leads to weakness. fire And the throat clearing.  Reflux? or lymph node? or something totally different? So we temporarily stopped the celebrex to try to solve the GI issues.  The medical equivalent of robbing Peter to pay Paul.  The joint pain – managed for now – is rearing its head. And why does a 10-year-old, with no gall bladder and a week of the worst reflux of her life – with no dietary changes – begin vomiting bile? Maybe just maybe we will meet up with a decent GI.  Girls can hope. So I sit.  We sit.  Waiting for answers to questions.  Waiting for answers to more questions than we will ever get.  But we are hopeful.  Anxious. At least right this minute the worst part of being here is passing the time with the stupid IV.

They got it the second time!
They got it the second time!

State of Mind – Part 2

There is something about sitting in a room full of pediatric cancer patients that numbs you, amazes you, and astounds you all at the same time.

There was a time when the little superheroes, the miracles walking around us, and the significance of it all may have gotten past Meghan.

superheroes

She is older now.  More weathered at 10 than she should be.  She misses nothing.  And to a child who has heard the word “cancer” spoken to her, around her, and beside her, her entire young life, she is acutely aware of its presence in the world.

With Cowden’s Syndrome comes cancer conversations.  Is a little fancier when you describe a “PTEN mutation, as causing benign and malignant tumor growth,” but the meaning is the same.

Anyone can get cancer.  At any time.  And certainly it’s almost unlikely that any of the children we saw today have our “Cowden’s Syndrome”

However since Cowden’s Syndrome, and cancer become so closely married – it is hard to consider one without the other, and days like today are especially draining on both of us.

We left the house at 8AM, and sat in traffic before arriving at our destination, (a route Google Maps tells me is 20.5 miles)at 9:40 – 10 minutes late for our appointment.  We then sat a good deal more, until almost 10:40, with plenty (read way too much) time to observe.

The facility is clean, and neat and tries to be festive.  Children were celebrating Cinco de Mao among chemo pumps, bald heads and IVs.  I watch and try to think nothing.  Because it is fortunately IMPOSSIBLE for me to know how they feel, or what they are going through.  But, an adjacent conversation involving a thin, beautiful, bald 5th grade girl and her dress for the dance was difficult to avoid completely.

We were met with the familiar and friendly surgeon who wasted little time before examining Meghan’s neck.  He felt and thought and asked questions.  “Has she been sick, any fever, trouble eating…?

“No, no, no.”

“Well, I don’t think there is a problem.  I think it is probably OK.  But just to be sure we’ll have you come back in 2 weeks.  If it’s not gone we will scan it then.  Oh, and you should see why her salivary gland is enlarged.  It’s not just the lymph node.”

“With whom would I check that?  Because for 6 months I have been talking about incessant throat clearing and all I get are theories.  The last ENT told me to see a GI.  Have you ever heard them laugh when you bring in a 5 foot 2 100 pound 10-year-old?  I have.  Any suggestions?”

Silence.

“Ok then, we will get you set up with an appointment 2 weeks from today.”

I had come in hoping for an all clear, or perhaps a 3 month review.  2 weeks had its pros and cons, and Meghan and I weighed them, silently and independently as we headed back to the elevator.

We arrived home at 12:20.  Four and a half hours.  Insanity.

This afternoon I was stressed.  Over nonsense.  When I am anxious I have an incredible need to control nonsense.  I have been stressed a lot.  I need a new outlet.  This one is making me not so much fun to be around.

I heard myself today.  My tone, my body language.  All so negative.  Not like me, and not the person I strive to be.

I was brought back on track by my own superhero.  Only the strongest can share what’s on their mind and in their heart.  That’s why I love her so.

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Wise beyond her years.  Worried about things she should never even have to think about.  Yet still able to find the simple beauty in the world around her.

I took a “time out” tonight to regroup.  She nestled up with Daddy.  Warms my heart to see her in my bed.

My nighttime prayers include the many who had their own medical adventures today, and my girl.  That she may know the joys of childhood… and for me, that I will remember to enjoy watching before they pass me by.

childlike wonder

 

State of Mind

Fortunately her shoulder injury has healed quite nicely.

She heals well.  Good thing.   She has had so much practice.

She progressed through the state math exam with extended time for writing.

She weaned herself off the muscle relaxants quickly.

She is tough.

Good thing.

Wednesday she pulled me aside in school and asked me to feel her neck.

“Mom, I think this is a lymph node”

As she gestured to her neck, not far above where the mass that had cause the suspicion that prompted the removal of her thyroid, had sat less than 3 months earlier.

Hesitantly I put my hand to her neck, not as much to check, but simply to verify.

I knew she was right.  She is always right.  I swear she’s like “The Princess and the Pea” sometimes.  She can feel everything.

Princess_peaBut I put my hand to her neck as she instructed and instantly knew there was in fact, one swollen lymph node easily felt.

“Mom, the surgeon said I only have to go back and see him if I have any swollen lymph nodes.  But, he said that was “highly unlikely.”  I guess he didn’t know who he was dealing with!”

She tried to make a joke, lighten the mood while reading me for a reaction.  I giggled.  I reassured.  I felt a deep sinking flutter in my belly.

Not because I assumed it to be a problem, but more because I knew this would unleash a cascade of additional appointments, and really… well, quite frankly… we are NOT in the mood.

Of course, all of that was, and is irrelevant.  I called the surgeon, whose office insisted I have a local clinician verify that it was in fact a lymph node.

I called first the ENT who has been dealing with the throat clearing issue, hoping to kill two birds with one stone so to speak.  HA!  His office released a new flock – of which we will have to contain what we can another day.  Instead of inviting us in to check on her improvement on his medication, he determined, sight unseen – and relayed through a secretary, that Meghan should see a GI doctor.

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Apparently his on the phone conclusion based on the fact that her symptoms had not fully resolved on the nose spray and increased reflux medication was that a GI needs to treat her for reflux.  While that may be true, on some level, at some point, someone at some point has to realize the two of us are quickly becoming overwhelmed, and sending us to another doctor is not always a good idea.  (Plus, when your kid is 5 foot 2, and 100 pounds at 10 – no GI takes you very seriously at all.)  And in reality – I just needed someone to check the neck!

So, I waited for our trusty pediatrician, and Thursday afternoon – on a bright sunny spring day – after an hour and a half wait – we heard what we already knew.  It in fact is a lymph node, and it should be looked at.

So as Meghan asked me in the car if she should be concerned, and I calmly let her feel my own set of chronically inflamed lymph nodes, I calculated our next steps.

When I called the surgeon’s office this time I was told we would be seen Monday.  They called Friday to let me know that our appointment was to be 9:30 on the 5th.

I woke up Thursday morning with a most unusual swelling in my left eye.  I can’t for the life of me figure out the cause.   By Friday when I went to tell my (patience of a saint) boss that I would need Monday off, I was looking far less than my best.  Puffy eye had turned red and was starting to resemble infection.

As I sat in the urgi care waiting room Friday evening ready to collect my prednisone, my antibiotic, and my stern warning that if things didn’t improve by Monday I needed to see an ophthalmologist, I wondered where the breaking point is.

We had some tough nights this week – the two of us.  We had some nights feeling a lot like we were bearing the burden of Sisyphus.

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It is an uncanny feeling to be at the bottom of the mountain without a prospect of getting to the top.  This feeling that we WILL be at this forever, requires careful mind games to overcome and is not for the faint of heart.  We both experience it very differently, so the trick becomes to rely on each other, but understand our vantage points are unique.  We MUST rest on each other, but others as well.  And we MUST teach each other to look for the sun and the flowers and the beauty around us right where we are.  It is a tall order for me some days.  My 10 year old, well, she is my hero.  Because, despite the occasional setback she finds a way to pick up and keep on keeping on.

i am oneShe sent me this in my Email this weekend.  I read it a bunch of times.  Then I hugged her.  She is determined.  She is driven.  She is my reason for staying focused.

So I shared with her a poem on my mind…

If you think you are beaten, you are
If you think you dare not, you don’t,
If you like to win, but you think you can’t
It is almost certain you won’t.

If you think you’ll lose, you’re lost
For out of the world we find,
Success begins with a fellow’s will
It’s all in the state of mind.

If you think you are outclassed, you are
You’ve got to think high to rise,
You’ve got to be sure of yourself before
You can ever win a prize.

Life’s battles don’t always go
To the stronger or faster man,
But soon or late the man who wins
Is the man WHO THINKS HE CAN! 

– Walter Wintle

Today, she had a swim meet.  Her team lost.  They usually do.  But they are great kids, who have a BLAST, and cheer for each other.  They generally have a great time.  And somewhere in between the team being hammered, she was on two second place relay teams, and pulled this out.

Gray Cap – Lane 4 (After her goggles flipped at the start!)

Clearly the highlight of my week.

Now let’s hope tomorrow is much ado about nothing, and we can get about facing the next set of plans life has for us.

In the meantime – your prayers as always, are gratefully accepted.