Future Doctor, Meghan

If they would just listen to Meghan.

I mean really listen, and stop dismissing her.

Since before she could talk we have been working to help this kid become more aware of her body.    She can troubleshoot what works for her.  She can tell me what foods and medicines help her or hurt her.  Every day she becomes more keenly in tune with herself.  Its necessary.  That is how we keep her healthy.

My heart always gets heavy for my friends whose children, despite everyone’s best efforts can not articulate their needs, pains, desires, or emotions.  Those are the situations where doctors might miss something- even if they are trying.  Those poor children might suffer needlessly if no one can determine the source of their discomfort.

But not Meghan.  If you will listen.  She will tell you.  If you pay attention.  You will understand.

If she hurts- the whole world might know.  If she doesn’t hurt anymore, even 5 minutes later, its like it never happened.

That’s it.  Plain and simple.

So when she hurt her hand June 4th, I kept waiting for it to get better.

I played tough for a few days, but it still hurt.

Then we tried ice, heat, brace, no brace, different brace – but the pain persisted.

Dr. Jill, our Physical Therapist kept saying, “I think it’s vascular.”

Meghan kept saying, “It pulses like my AVM.”

And on we went – to the vascular surgeon, for the MRI/MRA, to the orthopedist, to the local hand surgeon.  Each one finding a reason to dismiss her, and this pain that persisted.

Pain doesn’t persist.  Not like this.  Not with her.

And, when you have Cowden’s Syndrome, any pain that persists more than 10 days consistently really should be evaluated.  You never know where those tumors may grow.

But the MRI, the three hour MRI with 4,000 images was negative. (Although I still have my doubts.)

And, Meghan calmly told the vascular surgeon she thought it was an AVM.  He said no.

As the pain mounted over the weeks that followed, and we bounced through other routine follow ups that seemed to swallow up our summer, Meghan took solace in Dr. Jill.

You can’t put anything over on Dr. Jill, but she knows kids, and she knows Meghan.

“Look at this,” she said to me.  “It has its own blood supply.  That’s why it stops hurting when she puts pressure on that mass.  She is cutting off the blood supply.”

watch me

Meghan would smile, knowing she was understood – at least by someone.

“Vascular pain goes up the arm, orthopedic pain doesn’t,” she would almost  mutter to herself.

And I knew if they were BOTH sure, then I was sure they were right.

I emailed her oncologist, and her genetecist.  I sent them pictures.  “Biopsy those,” I was told in no uncertain terms.

So Dr. Jill wrote a detailed professional letter to a local orthopedist.  I am still not sure he understood all the words.

Then there was the local hand surgeon, who read the letter, and just spent the visit looking perplexed and bothered.  The MRI report was negative, his Xray was negative, and there was this bump below her middle finger.  He sent us away – apologizing for not helping, but convinced there was no need for surgery.

That was the day Meghan coined the phrase “Donkey Butts!”  And I couldn’t blame her.

donkey-butt 2

I went right home from that visit and sent a desperate EMail to the oncologist again.  This time I asked for a referral.

She is a woman of few words.  Her reply was a link, and the words “Go here.”

hand 2

So, I called and made an appointment.  They took our out of network benefits.  We got in the day before vacation.

He looked at Meghan.  He talked to her.  He sent her for more Xrays.  They were negative.  Then he looked at her hand again.  He told her that he knows all about kids and how well they know their bodies.  He told us he treats a few boys who grow bone instead of soft tissue tumors.  He told her that the boys ALWAYS know where the problems are.  She brightened.

Then he drew a very logical picture of the hand, and traced out the main ligament and tendon.  He showed the connection from the soft tissue tumor to the painful wrist spot.  He let her feel it, and he told her she made sense.  She smiled a huge smile.

Finally a doctor who DIDN'T remind me of this one!
Finally a doctor who DIDN’T remind me of this one!

The he said to us that even though the Xray is negative, sometimes surgeons have to use their heads.  Clearly the tumor on her hand was causing trouble.  Clearly it had to come out.  Exactly what that would mean once he got in there would have to remain to be seen.  Relaxed and encouraged that someone was using their head, we scheduled the procedure and left for Disney.

Disney had its ups and downs, and one of the struggles was the frequent hand and wrist pain. Meghan is in pain so often, she can differentiate between the chronic pain, like her hips and knees, and the pain that she can’t stand, like her wrist and hand.  Chronic pain is absolutely exhausting.

Today was the surgery.

20130820-090603.jpg

We went to a LOVELY outpatient facility on 42nd Street.  The place was clean, the reception was smooth and effortless.

The nurses were darling, every one of them.

The anesthesiologist instilled comfort, and the surgeon, Dr. R was warm and calming.

The procedure lasted longer than I expected – almost an hour and a half.

time-warp

I wasn’t surprised to hear the words that have become normal. “It wasn’t exactly what I imagined, but I am pretty sure I got it all.”

A soft tissue tumor, with roots, AND an AVM (arteriovenous malformation) with its very own blood supply!

So many thoughts went through my mind – including, “SHE KNEW IT ALL ALONG!,”  and “THANK GOD FOR DR. JILL!”

I was grateful for Dr. R, his patience, his trust in Meghan, and his ability to get it done.  I was also instantly tossed into a new level of worry.  See, all along they have been insisting the AVM in the knee was an isolated incident.  I shouldn’t worry about more cropping up.  Well one just cropped up.  Game changer.

I was thinking about the rock wall she climbed June 4th, and even after all this turmoil, I am still glad she did it.  Although we now almost undoubtedly know that the AVM was under the surface all along, and the bruising her hands took caused her body to “hyper heal,” and likely led to more blood being pushed towards the AVM.  The soft tissue tumor erupted some time later.

While the exact sequence of events doesn’t matter, a few things do.

Meghan and Dr. Jill are really intuitive.

AVMs can take place in multiple spots.

Dr. R had to scrape the scar tissue off the ligament, and tendon and nerve in the hand.

Meghan will need quite a bit of therapy (after 9 days of keeping the hand wrapped) to get her mobility back.

I absolutely can not wait to get the pathology report and share it with a few doctors who blew off my girl.

And, most importantly – NEVER DOUBT MEGHAN!

meg doctor kid

It Never Gets Easier

They say “practice makes perfect.”

I disagree.

No matter how many times we practice this scenario, for surgery, for biopsies, for tests- it is no easier now than it was the very first time.

And boy have we had practice!

This morning, as Daddy walked with her to the operating room,(our routine firmly in place – Daddy does the OR and Mommy does any overnight stays) I was still struck with the distinct feeling that I had been kicked in the stomach with a large pair of steel tipped boots.

This one should be ok. 9 days wrapped and dry. Stitches removed, and we should see progress.

As long as…

Well now we fidget and pray and keep busy. There will be time for the rest.20130820-090603.jpg

Extra Parts

We got the car back – with a few extra parts.

extra parts

 

And this morning for an added surprise a screwdriver left on the driver’s seat poked me in the bottom!

The car isn’t fixed.

We had to take it back to wait for the “Field Tech” to have a look.

Apparently the “Tech Line” suggestions weren’t helpful, so in their infinite wisdom, they one by one took out parts, swapped them with new ones, then put the old ones back in when the problem wasn’t fixed.

10 days in service and I left with the same broken car, with the same parts as when I dropped it off.

Except that a few “extra” parts were left on my seat and my console.

extra parts2

While we will make an appointment some time next week to leave the car for the “Field Tech,”  I had to laugh in spite of myself at the irony of the whole thing.

We have spent the summer at doctors.  Some doctors were routine, some were tests and follow ups for things that were not “ok.”  While there are  many things that will leave me unsettled long after the summer has passed, the most disconcerting right now is the pain in the wrist and the hand.

A three hour MRI, a phone consult with the vascular surgeon, a phone consult with the rheumatologist, a local orthopedist, and a local hand surgeon – NONE of whom have a clue WHY after 8 WEEKS there is significant pain flexing the wrist, or holding a pencil, or performing any number of basic tasks.

Tomorrow we will head to the hand surgeon in Manhattan, with hopes that he can process the “extra” bump on the palm of her hand, and understand its relationship to the pain, and offer us a viable solution.

hand 2

Too hopeful?  Maybe.  But, if I give up hope, where will we end up?

Raw with fatigue.  Frustrated by “extra parts” and the people who don’t seem to know what to do with them…

Which ones do we put in?  Which ones do we take out?

The similarities are almost uncanny.  What are the odds that my child and my car would both have problems where the only hope of an answer lies in the “super specialist?”

 

“Donkey Butts!”

Donkey Butt

I could barely contain my laughter, but by then we needed a good laugh.

We had just left the hand surgeon.  The one who was hopefully going to have an answer, and get Meghan some relief from the persistent pain in her hand and wrist.

I came as usual, armed with a thick heavy binder, a recent MRI CD and reports, a list of all current doctors.

I think I knew we were in trouble when he didn’t seem to see the small mass at the base of her middle finger.  You know, the one she says helps alleviate the pain when she presses on it?

He said it was “barely there.”  Yes, and 2 weeks ago it wasn’t there at all.

He took an Xray.  Obviously low radiation, (I hope) because no one left the room.

The bone structure is fine.

Shocker!

And he repeated to me that the MRI was fine.  (YEP, I know.)

Then he asked if she had a rheumatologist.

Yep, she told me to go see a hand surgeon.

And he asked me to explain Cowden’s Syndrome.

But, at least he, 40 years older than the other doctor, had the decency to take out his iphone5 and google it.

iphone-5-

I gave the beautifully written letter from our PT.  It explained everything so clearly.

Pause… Pause… Obvious think time for the doctor.

“I don’t know what to tell you.”

EXCUSE ME?

2008-03-24-excuseme

” I am sorry I wasted your time.”

That was it.  No request that we come back.  No suggestion on what to do next.  Pay the Copay (AGAIN!) and leave.

So when we got to the car Meghan and I were both agitated.  Rightfully so.  She is so frustrated.  8 weeks plus, and she doesn’t have the range of motion in her wrist.  She was so angry.  How is it that these medical professionals keep turning her away with no answers and still in pain?

I told her she was entitled to a fit.  She is above that.  She got angry for a bit, then frustrated.  But I have definitely had many worse fits this summer alone.

Then,  she said, “You know what Mom?  They are all Donkey Butts!  All these doctors that can’t fix anything, and keep wasting our time and your money- that’s what they are- DONKEY BUTTS!”

donkey-butt 2

I spend a good deal of time working with her on appropriate language for a lady.  But I almost had to pull over in hysterics from laughing so hard.  I think she nailed it – politely and accurately.

Round three Monday 10 AM in Manhattan.

roundThree

 

Tick Tock

wagner-college

I actually watched it happen.  We were walking up the hill to swim practice last night.  Then she was limping.

She handed me her bag – struggling to balance.  Before I could ask what had happened…

“My hip, my groin, the whole thing!”  Gesturing near her hip bone and down her outer thigh.

I looked for a bench but there was none.  She wasn’t interested anyway.

“We can’t sit – I will be late for practice!”  Exasperated that I would even think she should stop walking while writhing in pain.

“Um, Meg – I was thinking you shouldn’t go to practice.”

“No way!  We are here.  I am going, and besides- the only time I feel close to normal, like everyone else – is in the water.”

almost_normal_01

We took away soccer.

We took away dance.

We can’t take away swimming.

Spring 2013
Spring 2013

So I made sure she asked her coach to help her stretch the hip.  She stopped only once during the hour and fifteen minutes.  I am sure I could not have kept up.

As I walked, and she limped back to the car she said it was, “not so bad.”  And, she was “glad” she practiced.

Dedication.  Admirable.  Torture.

After the shower it all fell apart quickly.  She froze almost completely. We rubbed it, and elevated it.  Within an hour she needed help walking.

She got settled into our bed and tried to rub her hip.

The yelp indicated the pain on her hand and wrist has not subsided either.

As we got her comfortable I thought forward, about the week to come.

I emailed her genetecist and her oncologist this week.  I attached photos of her hand.  I attached the copies of the MRI report.  They responded inside of a few hours.

Biopsy those lesions.  On this they agreed.  Cowden’s Syndrome -PTEN Hamartoma Tumor Syndrome.  Soft tissue tumors are common.  The oncologist reminded me only one lesion was visible during her exam just 2 weeks ago.

I know.  I watched the other one pop out as she cried out in pain during a shopping trip to Kohl’s.  It wasn’t there.  Then it was.  Now it is.  And it hurts too.

Tuesday we will see an orthopedist.  Thursday we will see a hand surgeon.  Two more doctors we didn’t plan for.  Two more afternoons lost waiting.  Two more opinions to contend with.

surgeon5bl8

And the prevailing uncertainty that anyone will ever fix the problem.

She is walking a bit better tonight.  That is encouraging.  A nice afternoon with a friend.  Conversation for me was easy and comfortable.  Grown up talk – something I have craved, while the children swam in the pool.  Almost normal for a few hours there.  Almost.

The car is going to stay in the “car doctor” over the weekend.  Apparently its condition has been downgraded.

Paperwork to begin a complaint with Better Business Bureau should arrive early next week.

Maybe I should give the CAR an ISAGENIX shake or meal bar.  It might be more productive than what is being done to it.

www.meghanleigh8903.isagenix.com
http://www.meghanleigh8903.isagenix.com

Monday we should know more.

Monday we should also hear from the rheumatologist about her thoughts on the MRI.

Sandwiched in between concerns about family and friends alike.  In some ways our lives are miles different.  In more ways – they are exactly alike.

Patience.  Worry.  Anxiety.

Tick Tock, Tick Tock… that would be the sound of summer passing us by….

run-clock

Lemons

lemon eyes

Generally I try to be a pretty positive person.  But really I have to say this is getting a bit ridiculous.  I am starting to wonder if I am doing something wrong.  I mean everything feels like a project, every situation an issue.

Its no small wonder people sometimes tire of talking to me.  I tire of telling tales over and over again.  Really, I am not a big fan of drama at all.

And yet, as the precious weeks of summer tick by, and one obstacle after another seems to end up in our path – today I did feel like squeezing some of our lemons in a few people’s eyes.

My constant awareness that it could be worse; my attentiveness to the struggles of others is what keeps me grounded, but it may be even more exhausting.  The prayers for young babies, and new mothers, the prayers for families who have lost young loved ones to tragedy, the prayers for the young children who are ill, the prayers for my grandmas – all three of them dealing with their own health issues… and the list goes on.  I DO know it’s not just us.  But sometimes when it seems to be one lemon after another, I get tired of ducking.

lemon

I know the saying about lemons, and an old cliche is good now and again…

lemon to lemonade

But sometimes it just doesn’t cut it.

Sometimes lemons are, well – just sour.

My girl has been complaining of her wrist and hand since June 4th.  I remember the date very specifically.  And it has been a long 7 weeks.  The last few weeks of school she could barely write.  We tried braces, no brace, resting, ice, heat.  Nothing.  The pain gets worse.  Then the MRI says normal and I want to spit. (Lemon juice in someone’s eye!) Now we wait while the MRI gets reviewed again, and its time to have a surgeon look at what appear to be soft tissue tumors (at least 2 of them) forming on her hand.  One has been there since – forever.  The other appears to have grown in size in the last 72 hours.  I am not surprised they didn’t show up on the MRI.

This is the same child who took 7 sonograms to have her gall bladder diagnosed with “milk of calcium” and after three “negative” sonograms for the obvious mass growing out of her back years ago – the surgeon decided to trust his instincts and ended up removing a sizable lipoma.

This kid breaks all the rules.

And that’s before we even get to the ramifications of the diagnosis of Raynaud’s Syndrome and its implications made off the MRI.  ( I guess that means it was … almost normal?)

So tomorrow I will call an orthopedist to check on insurance issues and to see if they will take a look at this kid.  (This one comes HIGHLY reccomended! :-))She certainly can’t start 5th grade unable to write, and this can’t go on forever.  So, another doctor it is.

It should be easier to get to the doctor after Enterprise picks me up at 10 tomorrow and sets me up with a rental as my relatively NEW car spends one too many days at the “car doctor” who seem unable to fix the problem either.

This is how long I waited on hold – before I hung up the phone and drove there myself…

waiting

All this as we clean out the attic to prepare for the new roof to be installed in a couple of weeks, and we wait for the people to call us back about the class action lawsuit that somehow explains the water damage and dry rot in our bay window.

lemon rainbow

So if I stay stuck on the lemons I may lose perspective, and God knows I need that to get by. Instead of wishing troubles away I pray for the stamina to continue to endure, and endure.  Wouldn’t trade my  life for anyone’s.  But, God give me strength to find the rainbows – even in the lemons.

And as I organize my paperwork – constantly – tonight I write a check to support “Alex’s Lemonade Stand.”  And I pray for all the parents faced with cancer in their children.  It strikes fear in my core, so I do whatever little I can- knowing all too well we can all be tossed into places we would never venture to on purpose.

lemonade alex

And as I reflect on today, I guess it was a success.  We did get into our much underused pool for some mother/daughter time.

swim 1 2013

swim 2 2013

And when all is said and done, and I have had a few glasses of cider, and I can sit down and regain my perspective – I have a pretty cool kid.  This Cowden’s Syndrome thing – it really sucks.  But its such a part of us now, that I can’t imagine giving it up.  We are not defined by it, but it is a part of who we have become.

So in the interim, for those of us who by bilateral mastectomy have gone from a size C to an A cup – maybe this is a more appropriate way to view those lemons.

lemon bra

Couldn’t hurt.  Might help.

Keep laughing.  Keep swimming.   It’s all we’ve got.