Tag: Puberty

Bookends

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So my little girl took some of the influence of her Dad and has taken a liking to comic books.  She has been reading them on her Ipad, and although I might not admit it to either one of them, I kind of like the idea.  I like Superheroes, and their “Good beats evil” message.  I know it doesn’t always work out that way, but she is 9…

I sat in the MRI room with Meghan tonight – again.  And even though it is a wonder I could think of anything over the banging of the machine, and the remnants of this migraine I have been fighting for days, I kept thinking of bookends.

Yep, bookends.  See, back in June, on the first day after school was out for the summer we went for an MRI of her knee.  It was a Thursday, the Thursday before July 4th.  So, how ironic I thought, when earlier I was sitting in another MRI, this one of her brain, on the Thursday before Labor Day.

Bookends.  Our summer ends the way it began, waiting for test results.  Although I am starting to get the feeling that this testing and waiting will transcend all seasons.  I will just notice it more in the summer – the season where I have one full time job (Mom to Meghan,) rather than two (Mom to Meghan AND teacher.)

And I am reminded of the image of the dog digging up the street that Meghan found for me a few weeks ago.  This is what we do.

We do not accept anything less than an answer that makes Mommy comfortable.  When the doctors tell me that puberty is just starting earlier these days, I buy it – to a point.  When they tell me to consider all the hormones in the milk, and the chicken, I raise an eyebrow.  My girl who has been dairy free since she was 15 months old, and has almost never consumed a piece of nonorganic chicken, who is at or below the weight for her height, and who has a mom who went through puberty LATE, should be one of the early ones… I just don’t buy it.  So when the hormone tests don’t match, and I get doctors refusing to answer me, I push harder.  That is what the MRI was today.  My fault.  I needed to have them rule out a pituitary tumor.  We have Cowden’s Syndrome.  We grow things.  Someone should check.  Just sayin… Then, when the results are clean in a few days I will breathe deeply and accept that this just IS.

And the recurrent strep… well lo and behold, the ENT said there is regrowth of the tonsil tissue.  He wants to see her the next time she has strep.  He shouldn’t have to wait too long.  He also told me the right lobe of her thyroid was quite enlarged.

So we wait for the thyroid panel, and wonder if it has changed drastically.  And, we think of those nodules on her thyroid and the doctor who told me they will turn… not if – but when.

Bookends.

We started the summer at the doctor.  We spent most of the summer at the doctor.  Scan this, check that.  It will never happen like this again if I can control it, but it was necessary this time.

And in between the bookends of MRIs, we fit in some fun stuff.  There were some great play dates. a day trip to the beach, some swims in the pool. a FABULOUS trip to Disney, a week of Vacation Bible School – (although not our “favorite”one.)  There were some lazy days, and lots of just being together time.  We can get a lot of talking in on all those trips to the doctor.

I guess the summer wasn’t a total loss, and yet still somehow I feel sad.  Cheated.  I stress at the thought of the scheduling complications being back at work brings.  Holding up the appointments of a regular kid (eyes, orthodontist, swim class, PT, dance…) is tough enough.  Complicate it with Cowden’s x2 and it gets hairy.

Maybe I feel like this every summer.  Maybe I just love my girl too much.  Time marches on.  School next week ready or not!

My beautiful 9 year old!

My Most Special Gift

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Lucky, Meghan and Allie – My three girls

I am sitting on the couch, alone.  Unable to sleep because of the pain in my knee.

My left knee and I have quite a history.  Pretty much told it was “arthritis” as a young one, but that was never confirmed with lab work.  A car accident in 1991 banged it up and started the swelling on and off.  Arthroscopic surgery in 2000 to “clean” it out, gave me relief for a few years.  Now it, along with the horrendous varicose veins that plague my legs, are temporarily at the bottom of the triage list.

There are other things that we need to do first.  Plus, we can’t spend our WHOLE life at the doctor.

So, when I am in my worst pain.  The kind that causes me to actually ice and elevate the leg, and I start to feel sorry for myself I look at my daughter’s face and find my perspective.

I will be 40 in a little over a year.  My joints have had some time to wear and tear.  She will be 9 in a week.  She can’t run or ride a bike without pain in her knee.  She deals with a mass almost 3cm x 1cm intertwined in the side of her knee.It is always there.  Even on the “good days.”  She lives with he reality of the AVM that will continue to exist- to grow, and then be worked on, likely to only grow again.

As I climb the ladder closer to “middle age” thinking in terms of pain and management for the “rest of my  life” is less scary.  Then there is my girl.

Soon to be 9 years old.  Gluten, dairy, soy allergies. Pancreatic insufficiency,chronic herpes simplex infection, immune system deficiency, early puberty, Cowden’s syndrome, gall bladder removed, tonsils and adenoids removed (and now growing back), lipoma removed from her back, excess gum tissue removed from her mouth,  precancerous thyroid nodules, and an AVM that even after 4 surgeries just won’t quit.

Yet she finds plenty of time to laugh and smile every single day, and precious little time is wasted complaining about anything – from the one who could complain all day.

Life isn’t fair, but I am going to sit here with my ice pack and reflect on the fact that God is good – all the time.  And He gave me one heck of a sweet gift in my little girl.

6 Months…

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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.

“Every little thing gonna be all right…”

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http://www.youtube.com/watch?v=mACqcZZwG0k

Bob Marley – “Three Little Birds”

“Don’t worry about a thing,
‘Cause every little thing gonna be all right.
singin’: “Don’t worry about a thing,
‘Cause every little thing gonna be all right!”

Rise up this mornin’,
Smiled with the risin’ sun,
Three little birds
Pitch by my doorstep
Singin’ sweet songs
Of melodies pure and true,
Sayin’, (“This is my message to you-ou-ou:”)

Singin’: “Don’t worry ’bout a thing,
‘Cause every little thing gonna be all right.”
Singin’: “Don’t worry (don’t worry) ’bout a thing,
‘Cause every little thing gonna be all right!”

Rise up this mornin’,
Smiled with the risin’ sun,
Three little birds
Pitch by my doorstep
Singin’ sweet songs
Of melodies pure and true,
Sayin’, “This is my message to you-ou-ou:”

Singin’: “Don’t worry about a thing, worry about a thing, oh!
Every little thing gonna be all right. Don’t worry!”
Singin’: “Don’t worry about a thing” – I won’t worry!
“‘Cause every little thing gonna be all right.”

Singin’: “Don’t worry about a thing,
‘Cause every little thing gonna be all right” – I won’t worry!
Singin’: “Don’t worry about a thing,
‘Cause every little thing gonna be all right.”
Singin’: “Don’t worry about a thing, oh no!
‘Cause every little thing gonna be all right!

Cocktail umbrella top
Cocktail umbrella top (Photo credit: Wikipedia)

I can imagine sitting on the deck by the pool.  Oh, wait – the surgeon hasn’t cleared me to swim.  And, I still need a bathing suit.

The cute tankini I bought was vetoed by my husband who thinks it makes my boobs look fake.  LMAO at the irony of that!

Well, at least I can imagine sitting on the deck with a strong cocktail in hand… working to convince myself that every little thing is gonna be all right.

My daughter’s much awaited appointment was today.  The sonogram was at 1, and the doctor at 3:30.

The sonogram was thorough – took almost 45 minutes.  The doctor reviewed the images, but could not give us a clear decision until he uploads the CD  I brought with last September’s sonogram images for comparison.  

For right now he said things looked good.   There are MANY nodules, but most are smaller than one cm.  He is content to keep watching every 6 months if he doesn’t find anything on comparison that warrants a closer look.  Somewhere this has to be good news, although I am always afraid to get too relaxed, so I am waiting for the phone call.

What boggled me was how laid back he was about the puberty.  He told me even though she won’t turn 9 until August and she has been developing a good 6 months, that it is not too early.   He said to leave it alone.  Apparently she and I are the only 2 concerned.  I have been super upbeat about all the changes to her, but I can’t help it.  In my belly it just feels WRONG.

Maybe I am just too used to worrying.  And there are reasons for that.  Its seems to be all we do.  Sometimes good news gets to be harder to process because it comes so rarely.  Sometimes it is almost odd to hear that things are “normal.”

So, we will wait for the phone call to confirm.  Then we will table the thyroid issue till December.

Next up for my girl, MRI/MRA of her knee. June 28th.

For me, well, I need to find a dermatologist, someone to screen my kidneys, someone to follow the tumor on my spleen… oh, and I need a bathing suit.  According to my dear husband, one that doesn’t make my (fake) boobs look fake.

And, a LARGE cocktail with a cute little umbrella, and some Bob Marley in the background…

Every little thing IS gonna be all right!

Cloudy With a Chance of… Puberty?

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Cloudy with a Chance of Meatballs

So, last night after we left the endocrinologist‘s office, I couldn’t shake this book.  “Cloudy With a Chance of Meatballs.”  If you are not familiar with the story, basically in the town of Chewandswallow they get their meals from the sky.  They never  quite know what’s coming, but three times a day it rains things like juice… or meatballs.  Eventually this starts to become a problem for them, as the portions get larger and more unpredictable.  It is a cute story, worth a read if you have a little one.  But nothing I want to model my LIFE after!

This was the long awaited appointment for my 8 year old.  The one who has been showing all the signs of precocious puberty.  She has grown 5 inches in the last several months, lost almost all her baby teeth, grown 2 shoe sizes and now at 8 yrs, 9  months, stands 4 foot 9.  This is the appointment where we were going to get the results from the testing, and she was supposed to tell me that the blood in fact confirmed the early start of puberty.  Then we would go home, and start having chats, and we would make it through.

Except, as I have said before, things don’t often go according to plan.  So, regarding the extensive lab work up, she said, “Your daughter is NOT in puberty.  All the hormones that tell the brain to trigger development are sleeping.”

Question dog Excuse me?

How then do you explain the breasts that are developing, the palpable painful lump, and this giant growth spurt that you called “typical of puberty?” AND What about the breast sonogram?

Well that is normal.  It says “Tanner Stage II development.”

 

But doesn’t that mean puberty?, I asked.

Well, yes.

But you said… (As I reach for a copy of the report)  Hey, it also says “area of palpable abnormality of clinical concern… compatible with Tanner Stage II development!”  So, should we be concerned? (Getting slightly more alarmed and annoyed)

No, she says.  Look here at the pelvic report.  It says the uterus is not in puberty, but the ovaries are enlarged, and consistent with early hormone stimulation.

Stimulation from what?  Because now I am confused.  Is this puberty or not?

So, I kid you not, she draws me a picture.  A crude picture of two breasts, a uterus and two ovaries.  She puts a small dot on one of the ovaries and Xs it off.  She says that at some point she “probably” had a cyst on her ovary that caused her body to think it was in puberty and it began developing.  But don’t worry, it stopped because the hormones in the brain are not awake.

WHAT? Has anyone told her body?

I don’t need to see you again, unless you have a problem…as she pushes me out the door.

What about the sonogram that suggests clinical follow up?

UM, HOUSTON…. we DO have a problem!

I swear I almost asked for my CoPay back on the way out.

Is there anyone who gets that Cowden’s Syndrome is a RARE disorder characterized by a mutation on the TUMOR SUPPRESSOR gene?  If the body and the labs don’t agree, I think we probably have to look further.  Just in case there is a tumor somewhere that didn’t “fall off.”

Everything about this, from the difficulty of scheduling it at a major NYC hospital, to the way the report was written in the double speak of maybe its normal, maybe not, to the contradictory interpretation by the doctor from what she sees on the body and the paper, makes no sense to me.

I have nothing against weather reporters.  But they are wrong a lot.  Their life is of guesses and predictions.    I guess I hoped for more from the doctor than Cloudy, With a Chance of… Puberty!

I will get my umbrella,  my Mommy mouth, and all my questions.  I will keep asking until we get some answers.  But really, why must it always be such a battle?