Compassion Saves the Day!

Instinct.

I don’t know why I second guess her instinct.  Maybe one day I’ll learn.

We arrived in Manhattan early.  We dropped Mom off so she could get to her appointment.  We parked the car at a better rate than I expected.  We walked a few blocks nice and slow.  And we arrived at our 9 AM appointment by 8:35.  Paperwork completed – we were sent down to the waiting area for MRI.

An empty room, and a few minutes to spare, I stepped into the lady’s room.  No sooner did I get in there than I heard Meghan speak.  “Calling us already?” I wondered.

I joined her in the waiting room and the shell-shocked look on her face was a mix of horror and confusion.

“Mom, I don’t want him to stick me.”

“Relax, you don’t know.  He might be very good.”

“I’m telling you Mom, this is NOT going to go well.”

And, as I tried desperately to calm her rising anxiety, we waited.

We got called back and locked our things in our locker.  The technician sized her up and decided her carefully planned outfit would work and she didn’t need to change.  Then I asked him if I had to remove my jewelry.

“You can not go in.”

Calmly, ” I am sure I can, she has had countless MRIs and I have stood beside her for every one.”

“I will have to ask my boss.  And, we have to see if the braces are OK.”

“But, I told them about the braces when I booked the appointment.”

“Well this is a very strong magnet.”

And with that he led Meghan inside towards the machine and she promptly backed away.

“Mom, my braces!”

To which the technician replied, “You’ll have to reschedule.”

And then the anxiety took hold and my girl began to shake.

“I am very very angry,” I began in my “not so nice” voice.  “You have no idea the amount of planning that went into this, and the amount of worry that has been expended by my daughter.”

“I understand…” he began, in his patronizing, not very helpful voice.

And I honestly don’t recall if he got in another word, because Mamma bear was loose.

mama bear

I can’t even quote myself, because I was that flipped out by this man who dared to tell me he understood.  See,  I can be reasonable.  I really can.  You can tell me you are sorry.  But you can’t tell me you understand.  Because just like I don’t claim to understand anyone else’s life – no one should flippantly tell me they understand.  At least not until they have seen their child through at least 11 surgeries, countless procedures, ridiculous numbers of blood tests, multiple hospitalizations, and countless sub-par phlebotomists.  Not until they have sat awake at night calming their child’s trembling fears by touching them – just so they stop shaking in their sleep.  Not unless they know what its like to have candid conversations about pathology reports and the virtually insurmountable malignancy fears.  Unless they have heard their young girl ask if her children will one day carry this mutation that has caused her so much heartache.  Unless they have heard their 10-year-old consider whether its worth it to have their own children… one day.

See sometime two weeks ago we went for a routine follow-up at the vascular surgeon.  He did a sonogram of the AVM that caused so many years of heartache, and surgery in 2009, 2010, 2011, and has been blissfully quiet since the last surgery there in February 2012.  And he saw some “spongy” spots in there that needed to be looked at.  So we scheduled the MRI, knowing that we “saw this coming.”  The Celebrex had been destroying her stomach and controlling her knee.  The ultimate catch-22.  So the worry was about the MRI, and the needle for the contrast, and the wonder about WHEN, not IF the next knee surgery will be.

And all this was bottled up inside of me and came spewing out at this man who dared to casually tell me he understood what it meant to”reschedule” an MRI that had been deliberately scheduled based on time and location to correspond with a trip to the oncologist, and spare her an unnecessary day wasted at a doctor’s appointment.

Mama-and-baby-bear

And as I cried for a supervisor, Toni came flipping around the corner.  She sized up the situation, gave Meghan a blanket, sat her down, and told me she was going to fix it. And she did.

I have never in my life seen a supervisor in any capacity who was beyond competent, and extraordinarily compassionate.  She got INTO A TAXI WITH US, and took us across town.  She walked us into the facility, the entire time reassuring Meghan that she had a special nurse who would handle the needle.  I saw the look in Meghan’s eye that said, “That’s what they all say.”

But Toni didn’t lie.  Within minutes of walking into the facility we were greeted by Allison, and Manny.  Both talked to Meghan.  They looked at her arms.  They told her a blind person could catch her vein.  They told her it would be a butterfly.  They told her no IV.  They let her pick who would do the contrast dye and did it in such a reassuring way that she knew neither would feel badly if she picked the other.

MRI Dog (Rocky) always helps too...

MRI Dog (Rocky) always helps too…

Then Michelle and Chad made her feel like an old friend.  They were so warm and comforting.  They positioned her just so, and reassured her in such a way that she took this incredible deep breath.  And when Allison came in to give the contrast dye, Chad held one hand, and I held the arm and she never even felt the needle.  Chaos turned into probably the most successful MRI to date.  Sweet relief.

We had NEVER been in a machine like THIS before!

We had NEVER been in a machine like THIS before!

But we left the facility only for me to realize we were now clear across town without our car.  I held my breath and hailed my first cab. (Put that on the bucket list, and took it off in the same day!)

An hour with the oncologist, always plays with my mind a bit, but there will be time to process her recommendations for vigilant screenings necessary with Cowden’s Syndrome.

We left at almost 1, feeling quite like we had already lived several days.  Then there was this matter of the “Treat Shop” on the upper West Side.  I had planned to go because it was so close to the first MRI site… but not too close to our car.  I walked, she limped by the end, and I am sure I will pay for this for days, but we made it.  A small store full of glorious Gluten Free treats.  And there were 6 dairy and soy free options as well.  Heavenly – and my daughter said, “worth the pain!”

treat house

An afternoon playing with a friend from school, and the sound of girls giggling, made the horrendous morning, and the most unforgiving traffic I have seen in recent memory begin to leave my neck and shoulders.  As the tension began to release I found myself reflective.  Hopeful.  But still unsure.

Watching her at ease on the couch I am reminded not to plan.  I am reminded to trust Meghan’s instincts.  I am enjoying the cool breeze, and for the moment the uncorrected mess.

I am grateful for Toni, and Manny, and Allison, and Chad and Michelle.  If only everyone took their jobs so seriously.  Healthcare, and the world for that matter, would be in a much better place.

Even if just for today they made BEATINGCOWDENS a little easier.

Scars…

There are days I forget.

I forget that it’s not just Meghan, but also me with this rare disease.

As a matter of fact, it’s actually uncommon for me to remember.

Maybe it’s survival.  Maybe it’s maternal instinct.  Maybe it’s denial.  Maybe it’s some combination.

But then there are days that it smacks me right across the face.  And it stings, no, actually it’s more like a scalding burn.

I post mostly about Meghan.  She’s my hero.  She’s my inspiration. She motivates me to be a better person, every day.  But,  if I really want this blog to be transparent, and I really want the truth about our experience living with and beating Cowden’s Syndrome to be out there, sometimes I have to allow my own inner self to be exposed. 

I feel good.  I really do.  Aside from a little lag from my thyroid, I am feeling better and stronger than I have in years.

But there are the scars.  They hide behind my clothes like a little secret.  Cause people forget.  And that’s what I want, because most of the time I forget too.

scar2

But then I look in the mirror, and I see the scars across the implants replacing the diseased breasts removed in the nick of time.  And my shirt doesn’t sit quite right.  And it’s probably my own fault, as I refused the tissue expanders necessary for a proper reconstruction.  I didn’t have the time, or the energy, or the desire, or the stamina to put myself through the frequent fills, the repeated pain, and the additional surgery necessary for the sizes to be equal.  It just wasn’t worth it to disrupt our lives longer.

I saw the plastic surgeon last week.  My two-year follow-up.  Hard to imagine.  She gently reminded me again that she could even things out whenever I was ready.  No cost thanks to the positive pathology for breast cancer, and the genetic mutation.  No monetary cost.  I’m not ready.  Yet.

I saw the breast surgeon last week too.  I see her every 6 months, so she can make sure nothing sinister is growing behind those implants.  The reality and the reminder that as fortunate as I was – I still had breast cancer.   And once you know for sure that those malignant cells had life in your body, you never look at things quite the same.  “No lumps or bumps,” she happily reported.  “See you in 6 months.”

I can’t wait.

scar 3

And there are the lymph nodes in my neck.  They were checked last week too.  Sonogram.  As long as they stay stable, we can leave them alone.  “But, if they grow…” she reminds me every time.  Six months for her too.

And my legs.  Fitting into the smallest size they have ever in my life the veins are protruding again.  The PTEN diagnosis, known for enhancing vascular issues, perhaps the explanation for the vascular problems that have caused 2 operating room visits and 5 in office procedures since I was 23.  But, it doesn’t really matter I guess.  The legs start with a familiar heaviness.  Then there is the throbbing.  The last thing I feel before bed, and the first thing I feel after the alarm gets shut down.  And the pulsing – like I can feel the blood moving the wrong way through the broken veins.  And the giant bulging, from groin to ankle, that makes it a little less fun to buy the shorts in a size 2.  I switch to “Bermuda” length and some sundresses.  I wait for the word that GHI has approved another vascular procedure.

Not to mention I saw the GYN Oncologist too.  Everything ramped up a notch with the “Cowden’s Syndrome” label.  There are no “regular” visits anymore.  Even with that benign pathology, it’s a forever commitment to the “Clinical Cancer Center” of the hospital.  Two years since the hysterectomy too.  Time marches on. You can barely see the scars from the laproscopy.  But I know they are there too.  A few inches under the implant scars.  Reminders of the year that changed my life.  Our lives.

The week finished with genetics.  Our geneticist – found by an incidental internet search at the recommendation of our physical therapist, is a gem of a man.  He greeted me with a hug and a smile, and exclaimed that I looked better than I did at my diagnosis.  Then he drew my blood.  More genetic testing.  This time not because of the Cowden’s Syndrome.  This time, it is to fulfill the wishes of my father.  Wrapping up a genetic counseling visit I completed in April, and after consent was received from GHI, the vial of blood was drawn to test for the markers for pancreatic cancer, the killer of my father, and paternal grandfather, as well as about 15 other markers I probably don’t want to know about.  We both said a silent prayer that the test yielded a whole lot of nothing.  We hugged again.  It’ll be about 6 weeks.

So this morning my shirt didn’t fit quite right.  The indentation on the right side was causing the shirt to fit lopsided.  And the vein bulging out of my right leg, especially just above the knee was a little too much for me to take.  I struggled with my tears, trying desperately to hide them from my extraordinarily observant soon- to- be -11 year-old.

This is the reality she knows we share.  Yet, I want so badly to help her maintain some of her youth.  Worry free innocence taken with the words, “You have a mutation on the PTEN gene…” and years of her own surgeries have stripped her of some of the privileges given only to the young.  There is something about 11 surgeries with no real end in sight, that can leave you a bit anxious.

scar 5

It only took a minute.  Although it seemed longer.  A hug from my husband.  My ever patient, loving soul mate, who makes me feel beautiful just by the smile in his eyes when we kiss.  And it was time to shake it off.

 

But not without first acknowledging that maybe that was quite a few appointments for a week’s time..

When we got in the car to head to the doctor, the Christian station was playing one of my favorite songs, “Fix My Eyes,” by For King & Country.

There are no coincidences.

And as we sang along, I looked in the rear-view mirror.

“Fix My Eyes”

“Hit rewind
Click delete
Stand face to face with the younger me
All of the mistakes
All of the heartbreak
Here’s what I’d do differently
I’d love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on youI learned the lines and talked the talk (everybody knows that, everybody knows that)
But the road less traveled is hard to walk (everybody knows that, everybody knows)
It takes a soldier
Who knows his orders
To walk the walk I’m supposed to walkAnd love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on you….”

Click the image to hear the song…

We spent Friday looking for sites for a fund-raiser for “Rare Disease Day 2015.”  We met a lovely woman who was surprised we weren’t raising money for us specifically.  We explained that we were grateful.  I feel well enough to work.  We have good medical coverage. There are so many not as fortunate.
scar 1
When it gets to be too much, I know to fix my eyes on things far beyond the mirror.  I have a greater purpose right in my own house.  And WE have a greater purpose.

We are BEATINGCOWDENS… together!

Coaches Change Lives

I know that teachers have the power to change lives, but as my girl gets to the middle school years, I am really starting to think the power is with the coaches.

I have always wanted my daughter to be an athlete, and truth be told, THAT didn’t take much convincing.  She is a natural competitor.  She loves the thrill of racing. competing, and performing.  She has done some time in soccer, with some fantastic coaches, who worked to nurture her.  She loved her time dancing.  But, her body, much to her chagrin, was not made for pounding.  The knees, and hips, and major joints couldn’t handle the impact.

So we headed to the pool.  Her first experience with any competitive swimming came at the age of 9, on a CYO team we were connected to through a friend.  Soon after that season she tried out, and was accepted to join a 12 month team.  She began with them in July of 2013.  And, while the desire to compete was always strong in her, it seemed there was constantly something standing in her way.

some days

We started the year with the goal of making 2-3 practices a week.  But, in the fall things took some wild turns, and there were migraines, and neurologist visits, viruses, and fatigue, and strep, and one obstacle after another.  There were weeks one practice seemed like a feat.  Meghan had a hard time finding her place, because she wasn’t there much.  And the cycle continued.  During the fall my father became ill and passed away quite suddenly in December.  That set her into a bit of a tailspin.  Then in the end of December a routine thyroid appointment told us there was much to be concerned about, and that she’d need her thyroid removed.

coach

Ironically this is about the time she started to enjoy going to practice.  The coaches were intelligent, and compassionate.  The kids were all finding their way.

Meghan responded so well to the two young women who coached her most often.  They understood her medical trials, but treated her no differently.  They pushed her just enough, but never too hard.  They listened when things hurt, and gave her ways to work through it.

She mustered the courage, and stayed healthy enough to make it to her first big meet in January.  She was awed by the whole experience, and truth be told, I don’t even remember what she swam.  Like so many firsts, it was about getting it done.

Thyroid surgery in February sidelined her for a few weeks.  And, long after her body had healed physically, her thyroid hormone levels never seemed to take to the synthetic replacements.  An emergency room trip in February – 10 days post op, led to an overnight stay and the elimination of the synthetic calcium from her diet completely.

But, by the beginning of March she headed back to practice.  Her coaches welcomed her, encouraged her, and built her up.  She started making regular practices, and swimming CYO at the same time.

Then, in May her body quit again.  Severe gastritis landed her in the local hospital for 6 days.  She missed her last CYO meet.  She underwent extensive testing, and the blame for the erosions in the esophagus, and the inflamed, bleeding ulcerations in her stomach lay with the Celebrex – the very medication that was allowing her to function through the chronic pain that plagues her.

Coaches-change-lives

Crossroads.

The elimination of Celebrex, and the discoveries of the damage it had caused in her GI tract, led to changes.  Her already Gluten, Dairy, Soy free diet, became also free of beef, spices, chocolate, and the other tastes that had carried her through.  Then there was the pain.  The constant awareness of pain in all her major joints was playing mind games with her.  The pain – very real – could be fed nothing to control it.  Oral pain meds were, and still are off limits.

Weak from her stay in the hospital, it took another week home before she could even consider a return to practice.  And when she did, she was angry.  She was angry at her body for the pain, and angry that she couldn’t keep her old pace.  She was just angry.

But the coaches, they were supportive.  They let her take the lead.  They let her take her time.  She rested when she needed to. She left early when she had to.  And finally, just about 3 weeks ago she started making full practices again.

The pain is a daily battle.  One she is fighting with mental power to overcome, and the best nutrition we can offer to her.

Last week she made 4 days of swim camp with the varsity swimming head coach at the local college.  6 hours a day.  She slept well.  She was sore.  But she was determined.

So, when we set off for the meet upstate yesterday, my expectations were low.  I was hoping she would finish without disqualifying.  100m of butterfly is not for the faint of heart, especially in a 50 meter pool.  But she did it.  And closed in with a time .67 seconds away from qualifying her for Junior Olympics.  Junior Olympics, the best of the best swimmers in her age group.  An honor just to make it in the door.

We went back today to give it one more try, but it wasn’t meant to be.  This year.

Close doesn’t cut it.  This I know.  Except when you consider that she got THIS close, despite all odds, it’s something to consider.  Meghan’s synthetic thyroid replacement is not working.  It’s just not.  At our last appointment we found out her TSH level – the Thyroid Stimulating hormone has increased by over 300% in 6 weeks.  Post operatively it remained about a 10, it took a brief dip to 6, and then over a 6 week span increased to 20.5.  ABNORMALLY HIGH is what it says on the lab report.  That, combined with her low levels of T4 means that the work of the thyroid, that can not be done by the gland that was removed, is not being done by the medication, which has just short of doubled since February.  The endocrinologist is baffled.  I’m concerned, but not shocked.  He agreed to research alternative medication, but he has, “never had to prescribe one before.”  For those of you not thyroid patients, you are considered hypothyroid, once the TSH goes above 5.  Most people feel human between 1 and 3.  I function best when mine is .5.  At 20.5 you would likely not find me out of my bed.  You would certainly not find me at swim practice.

“Mind over matter,” we say.

“Everyone has something,” we say.

“Show the world you are better than Cowden’s Syndrome,” we say.

And she does.  All the time.

On the way home we talked a lot.  We talked about obstacles, and overcoming.  She started to set goals.

swim_coach_journal

And then, there was this text from her coaches.

“”Hi Mrs. Ortega.  (We) just wanted to send you guys a text and let you know how proud we are of Meghan.  She is such a pleasure to coach and is always looking for ways to improve and be her best.  Swimming isn’t only about the times, it’s about the people and having the opportunity to create and share memories, good and bad.  Meghan has so much drive, and goes through more than we can even imagine.  She is truly amazing to go through everything she does and still push her body in the water.  Today was just the first time.  We know there will be plenty more opportunities for her to make cut times, and we know she will.  She has limitless potential and we want her to know that.  She is truly an amazing person, and we are lucky to be able to coach her.”

inspired-life

And in that moment, everything was OK.  Coaches have this incredible power.  They can motivate and heal and push in the same breath.  They are gifted with selflessness like no other.  My heart is grateful for these women who will continue to shape my daughter’s future.  May they always know the impact they are having on a life full of bumps, twists, and turns.

Champions of HOPE

It’s no secret that we have been followers of “The Global Genes Project” since our diagnosis in 2011.  Meghan fell in love immediately with the denim ribbon, and their slogan, “HOPE it’s in our Genes!”  That play on words stuck with her, and the ribbon gave her a good deal of connection at a time when we weren’t sure if we’d ever connect with another soul with “Cowden’s Syndrome.”  The connection with the RARE Community at large carried us through those earliest days.

hope-its-in-our-genes-300x88

The end of 2011 and well, 2012, and… well, you get the idea… held some tumultuous times for our family.

Adjusting to the diagnosis was not easy.  Finding balance within the labels, and the risks, and the screenings, and the surgeries, and the appointments was (and sometimes still is) a struggle.  In the months when the diagnosis was at its newest, Meghan’s thyroid was called into question several times.  We discovered nodules we never knew were there and learned the early risks of thyroid cancer were real, and ever-present.

She soon underwent the most horrendous of what would be 4 thyroid biopsies over the next 2 years.  Scarred physically and emotionally, we began to wonder about this beast we were up against.

In February of 2012 Meghan had her 4th knee surgery for an AVM (arteriovenous malformation) in her right knee.  Now convinced it’s stubborness could be credited to Cowden’s Syndrome, the fight to control it’s growth took on a whole new meaning, and we were referred for consultation to Boston Children’s Hospital.

While we balanced the screenings for Meghan, I was sent to my own set of initial screenings.  Being 38 and newly diagnosed, I was in the battle full on, and I had had no idea.  All the imminent cancer risks associated with Cowden’s Syndrome – except for the thyroid which often comes earlier – seem to peak right around 40.  No stranger to doctors, I was trying to figure out how the diagnosis helped explain the roadmap that was my own medical history.

In March of 2012, I underwent what was to be a “prophylactic bilateral mastectomy,” to battle the 85% breast cancer risk I had with the PTEN mutation that caused Cowden’s Syndrome, and my own medical history which had already seen 7 increasingly suspicious breast biopsies.  Seven days later, while having my drains removed, my husband and daughter sat in the room as the doctor announce it was a “good thing we moved when we did.”  My left breast, the one that had never seen a scalpel, had 1 centimeter of DCIS, close to the nipple and clear of the chest wall.  I had breast cancer.  They found it by accident.  My aggressive, intelligent surgeon, who I met because of my diagnosis, and really BECAUSE of my daughter had saved my life.  I needed no treatment.

faith_hope_breast_cancer_puzzle

I left the room that day holding the two people I love more than anything.  Unaware of the plans clearly in place for us, I was so filled with gratitude, and so in awe of the reality that if I had never had Meghan, I would have likely never known.  And the surgeon’s words, “If we had waited till July like you had wanted, you would have been in a fight for your life,” still ring in my ears.  Sometimes you have to stop the “what ifs?” and just say “thank you.”

Ten weeks later I was back in the hospital for a complete hysterectomy.  A suspicious uterine polyp, enlarged ovaries, and Cowden’s Syndrome combined again for too great of a risk, and the recommendation was for surgery and quickly.

happy hysterecomy

The shock on my body, the trauma to my family at this point was intense.

I had begun to scour the internet looking for places to go.  I found http://www.PTENworld.com and its dynamic young moderator, a Cowden’s patient for many years.  I found Facebook, and a beautiful support network there.  I found a yahoo group, and a mom there who has consistently gone above and beyond for me, simply out of goodness. Finally, there were real people I could talk to.

One day that Spring I received a Pandora necklace with a pink ribbons on it.  After years of advocating for my mother, a bilateral breast cancer survivor, holding the pink ribbons that belonged to me felt strange.  Yet, so did the new boobs, smaller, but perkier than the old ones, and all the clothes I was learning no longer would fit quite right.  So, I took comfort in that necklace and I wore it a lot.

pink ribbon pandora

And one day my very obsevant girl, who was 8 at the time, a few months shy of 9, asked me “What stands for me?  The gold ribbon is for childhood cancer, the pink ribbon is for breast cancer, the puzzle piece is for autism.  What about me?  What about people like me who are dealing with this (Rare disease) every day?  I NEED something mom.  Not to have a thing, but for my identity.”

Stunned, as usual.  I realized I had begun to heal myself, to seek comfort for myself, but I was leaving her behind.

So I happened to be retelling the story at lunch.  And my teacher friend, whose husband is a jeweler, and who has a son with autism, really “got it” on so many levels.  She told me she’d talk to her husband and see what was around.  So I gave her a denim ribbon sticker from the Global Genes Project, and they were on a hunt.  Which turned up nothing.  There seemed to be no piece of jewelry worldwide to symbolize those with Rare Genetic Disorders.  And, with there being over 7,000 RARE dieseases, accounting for almost 10% of the population, to us this was silly.

So my friend’s husband offered to make one.  For Meghan.  Because if she wanted a piece for her “identity” she should have one.  So he did.  It took months.  And it was perfect.  Absolutely perfect.  And he was so generous in the donation of his time, all to light up my girl’s world.

 

August 2012

August 2012

 

Typical Meghan, no less that 5 minutes after she put it on, she started with, “Wouldn’t it be great Mom, if these were available all over the world, and then we could see them when we went places, and we would know the people who have, or love people with RARE diseases?’  And the conversation continued to include asking me to reach out to The Global Genes Project to try and make it a reality.

Well two years have gone by.  Felix and I each wear one too.  Only 3 ever made.  Until recently.

There have been lots of EMails exchanged.  Lots of conversations.  Lots of people.  Ultimately they did decide to have the necklace made, and while the decision thrilled me, I would be lying if I said that I wasn’t disappointed that they couldn’t use our friend, the jeweler.  But, business decisions are what they are, and this one was not in my control.  And, despite that disappointment, Meghan’s dream, her vision, is becoming reality.  We received 2 samples this week, and a “THANK YOU” from the team at Global Genes!  The necklaces will be on sale through http://www.globalgenes.org in the fall!

denim ribbon necklace 1

denim ribbon necklace 2

Two years have gone by.

I have developed deeper, closer “long distance” relationships with some “kindred spirits” in the Cowden’s Community – globally!

My girl has some of her own friends with Cowden’s now, spread across the world.  She will be 11 soon, and is quite the young lady.  She understands life on levels deeper than she should.  Most impressively she understands that despite our struggles, there are many in the world who struggle in heart, mind, body, and soul.  She knows that “Everyone has SOMETHING!”

This past year she organized an assembly at our school.  She worked with Student Council to arrange an evening fund raiser.  She partnered with a friend in her own class who has a RARE Disease.  We sold T-Shirts.  We received intense support from faculty, and parents and students.  Every child got a denim ribbon to wear for RARE Disease Day.  We sent thousands of dollars to The Global Genes Project.

She has already begun to plan for next year, and wants a much bigger fund raiser.  “At a place Mom.”  We can really get the word out and raise money.  For The Global Genes Project http://globalgenes.org/, and for the newly founded PTEN Hamartoma Tumor Syndrome Foundation http://www.ptenfoundation.org/, another organization close to our hearts.

She has a mind that never stops.  She has the heart and voice of an advocate.  And this year, she was nominated for the TEEN Advocacy Award at The Global Genes Project.  (If you scroll down, the teens are close to the bottom.)

http://globalgenes.org/2014-rare-champions-of-hope-nominees/

Meghan 2014 Nominee

Meghan 2014 Nominee

Champions of HOPE indeed.  So proud of her.  So proud to see her name with all the others who have decided to “Do Something.”

 

“HOPE it’s in our Genes!”

We are BEATINGCOWDENS!

One of a kind…

beatingcowdens:

In light of the events of this week, I wanted to reblog this so my next set of thoughts will make sense!

Originally posted on beatingcowdens:

It probably started in the spring.  Meghan’s class had been working on a fundraiser for Alex’s Lemonade Stand. (alexslemonade.org)  The entire third grade was raising money for childhood cancer, and she took her fundraising work very seriously.

Meghan decided to make a bookmark, with a picture of my cousin Meghan – Angel Meghan as we speak of her – who died from Leukemia in 1991.  She wanted to make her connection to the fundraising personal.  As we prepared baskets of bookmarks to leave with people we knew, Meghan decided we should sell ribbons too.

So, I asked her what color?  She wasn’t sure what I meant, but I really didn’t know if there was a color ribbon for childhood cancer.  So, she took out her iPad and a quick search found us gold.  The gold ribbon was the color for childhood cancer.

 So we headed to Michael’s and…

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4 Doctors and a Dog Surgery

Before the school year closed my principal told my daughter to do whatever she had the urge to this summer.  Knowing she was a good kid, she understood his meaning.  He told her to play hard, and not worry about getting hurt, or hurting.

When I shot him a look, he laughed and ignored me.  Speaking right to Meghan, (referring to an event at school last June where she climbed a rock wall and ultimately needed hand surgery) he asked her if she would climb the rock wall again.  She said, “Definitely!”

He smiled at her, knowing he had left his mark in the just over a year she spent at our school.  Her confidence was up, and she knew the satisfaction of completing a task, and sometimes even winning – far outweighed the physical consequences that simply seem an inevitable consequence of being her.

And yes they are all about the same age, mine's just REALLY tall!

And yes they are all about the same age, mine’s just REALLY tall!

 

 

Turns out that very conversation was replaying in her mind as she was first to cross the finish line in the “Fun Run” this morning, held annually in memory of my cousin Meghan, her namesake.  The pleasure in her eyes outweighed all other things as she held it together long enough to get in the front door before she asked for ice.

Reminding me today as educators we shape lives in ways deeper than the classroom.  I am grateful…

school closed

Meghan needed this morning.  As a matter of fact we needed it – so badly that I think even the rain knew.  And maybe my Dad, my cousin’s “Uncle Tom,” was able to push those clouds out-of-the-way for a while.  His angel wings are 7 months strong today.  I think we got a special favor.

angels

It’s hard to believe we’ve only been out of school for a week.  My head is spinning.

Monday was the rheumatologist, full of confusion, still perplexed by pain without swelling that plagues so much of her body.  We spent hours, and arrived home minus a copay and with little to show for the trip.

Tuesday morning as we prepped for the GI, fortunately a local appointment, I got a call from the vet.  “I know Allie is scheduled to have her teeth cleaned tomorrow, but we have a cancellation.  Can you bring her today?”  All about getting things done, I got the dog in the car and dropped her off for a dental cleaning.

Of course, I left in tears because as tough as I want to say I am about the dogs… I am who I am.

So when they called me a bit later to tell me she would need 5 extractions, my heart almost stopped.  But, there was little choice so I consented.

We headed to the GI and had a pleasant visit there.  It’s always easy when things are going well, and generally the stomach is so much better since that stint in the hospital in May that we are clearly headed in the right direction.  We left with an appointment in 6 weeks, and told we could slowly, and carefully start reintroducing some of the foods stripped from her already restricted diet after the diagnosis of severe gastritis.

I picked the dog up a bit later that night.  And her pain medication, and her antibiotics, and as I was leaving even full of relief to see her, it was hard to tell what was whimpering louder, Allie, or my Visa.

 

Ouch!

Ouch!

Wednesday another local visit, this time to the orthodontist.  And instead of getting the news that the braces are ready to come off, she left  with more rubberbands.  The initial projection of having them removed in February seemingly a distant memory, and more conversation about her teeth and how “unpredictable” they are.  Why not? So to make sure that they don’t move too far in the wrong direction – we get to go back in 2 weeks, then in 4.  We’ve got time I guess.

Thursday, after feeling confident that the dog was on the mend, we left for the endocrinologist in NYC.  A somewhat productive conversation at least led to a mutual agreement that the synthetic medicine may not be working for her.  Her fatigue, I was told, “may not” be associated with her insanely elevated blood levels.  We’ll get the labs on Monday.  Two more 6 weeks cycles for the levels to regulate.  Then we try something new.  12 weeks is a long time to look at continuing to feel less than your best, but at least we left with a more open-minded doctor than when we started.

“This is getting old.”

I’ve heard that phrase a few times from my normally happy, easy-going kid.  At 10 years and 11 months she knows chronic pain, needles, surgery and waiting better than anyone should.  When she asks about my childhood, and I tell her that I also went to quite a few doctors, (although not as many as she does,) she tells me I am “lucky I didn’t know I had Cowden’s Syndrome.”

And as I am left to ponder what it must be like knowing more about genetics and your broken PTEN gene than you might ever want to, I think about how hard it must be.  The thoughts that go through her head, the level of her vocabulary, her insight.  So much to absorb, so much maintenance.  She gets that she’s lucky in some ways, but overtaxed in others… it is so easy to forget that she’s not even 11.

That is why mornings like this one have to happen.  That is why she has to sometimes taste a little bit of victory, when she feels like the challenges might swallow her up.  That’s why she has to run as if she has no pain.  That’s when she gets to be a kid.

fun run 1

This was the worst of it – this week, for doctors.  This was my worst scheduling job by far.  On the 14th she has one and I have one.  Then on the 15th I have 4. (Genius!)  And after that things lighten up considerably.

This week I settled some paperwork that has been lingering.  I fought over medication with the pharmacy.  I began the process of organizing a few very chaotic things.

Today we got to see some family.  Meghan got to hug three great grandparents, two of which are in their mid 90s!  We got to chat and to eat and take a break.

Tonight we will sit with a sweatshirt and watch the sky for fireworks.

Tonight I will thank the angel who moved the clouds away this morning.

Come on summer – we are READY!

Finding my “Happy Thought”

It was a few months ago.  I can’t quite recall the date.  It wasn’t my finest hour. (or day, or days…)

I was grumpy.  Worried.  Angry about the struggles my girl was being forced to endure.  Twisted about a future of doctors appointments and surgeries.

I had noticed she seemed extra down, and I took it as my cue to worry harder.

At some point, I broke down, expecting a clear answer to the question, “What’s wrong?” so I could continue the business of worrying some more, and searching for answers.

But the answer wasn’t even close to what I expected.

“Mom, you need to find a “Happy Thought” because you being like this all the time is really affecting me.”

Neverland happy thoughts

Um, ouch.  Wow.  And she sure told me.

She wasn’t being disrespectful in the least.  We have worked on honest speech and clear language, for survival – and to help us prep for the teen years.  She was doing exactly what I asked of her.  She was telling me what she was thinking.  And she was right.

Years of parenting a chronically ill and allergic child have left me in a permanent hyper-vigilant state.  The “other shoe”  has been known to drop without warning, and there is a constant need to search, study, learn, and discover whatever I can about whatever is plaguing my girl.  I am her advocate.  I am her voice.  We have between us undergone at least 17 surgeries in the last 11 years.  That doesn’t include countless hospital stays, tests and procedures.  There is always a pile to contend with, whether its bills to fight or file, prescriptions to order, reports to hunt down or appointments to make.  Life is very busy.

Neverland-HOOK

There was a time I used to walk for fun.  Hours on end with my music in my ears.  I would walk for miles.  I would walk everywhere.  There was a time I would read for fun.  Not medical books.  Just leisurely reading.  I used to watch “Law and Order.”

Now between working full-time, parenting full-time, chauffeuring to appointments, trying to make swim practice, keeping food in the house, keeping some semblance of order, including clean laundry, clean curtains, and clean cabinets – it was easy to get swallowed up by obligation and forget the joy in my life.

To be quite honest with you, there isn’t much I would change.  Do I sometimes miss those long carefree walks?  Definitely.  But, would I for one second trade one bit of my beautiful, tenacious, funny, stubborn, intelligent little girl?  Not a chance.

Hook movie

We watched “Hook” a few months back.  It was a rare occasion when I sat to watch a movie.  It is one of my favorites.  And for those of you who might not be familiar, it’s a “Peter Pan” spin off where Peter ended up all grown up – a lawyer.  He forgot his magical youth, and the story takes him back to Neverland to find it again.

I am sure this is where she got her admonition for me to find my “happy thought,” as Peter needed his to remember how to fly in order to beat Captain Hook.

I thought and I thought, long after she had said the words.  I was tempted to compare myself to other adults, and justify my grumpiness.  But I resisted the urge.  These words weren’t spoken to another adult.  They were spoken to me.  And what a gift she had given me.

peter-pan-best-quotes-sayings-faith-trust-good

Transformations don’t happen over night, but I have forced myself to become aware of the things that give me pleasure.

I love to write.  And so I have been trying to give more attention to my blog.  Therapy on a keyboard.

I have taken my feet instead of the car wherever I can, and wherever time allows.  I can’t walk for hours, but I can appreciate the short walks and relish them more.

I am realizing that a happy Mom is some of the best help I can give.  I won’t know all the answers.  I can only give her the same honesty I ask of her, and I can only do my best.

And while we focus on being positive, and its something I ask of her all the time – it’s not fair to ask it and not model it.

So we are all a work in progress.

And when I really soul search for what makes me happy, my pleasure really lies in seeing other people happy.

My other passion, my other therapy, is my Isagenix.  I fell into this company 2 years ago when my husband was in need of fast, significant weight loss.  For a year I bought products for him diligently.  He maintained the 50 pound weight loss he attained in the first 3 months, and now, 2 years later is working on “the last 20.”

 

I watched him for the first time in our marriage lose weight to keep it off.  I watched him gain energy, and generally feel better.

And I did what any Mom would do.  I researched – for Meghan.

And as I read and read and looked at articles, and the science behind the program, I heard the familiar musings that my trusted alternative medicine doctor had been sharing with us for years.  The same ones that helped us transform Meghan from “sickly” to chronically ill.  Several major steps up.  Trust me.

And I started to give my girl shakes full of protein, and nutrients, and she felt better, and better.  And soon she was asking me for more.  Brain food.

But it wasn’t until May of last year, a full 11 months after I had been giving the products to the two people I love most in the whole world, that people started asking me.  And then I couldn’t stop talking about the amazing things I had seen in my house.  And soon I had 5 friends all feeling great as well.  I was giddy.

I was now making money for helping people eat well.  Amazing to me.  I started to attend training, and listen in on conference calls.  I was no longer scared of “Multi-Level Marketing.”  I became educated about the systems and the generous compensation.

And one day, as my family sometimes does, I got called out again.  This time it was my husband.

I had lost a lot of weight – mostly due to stress.  I had dropped several sizes and was scrounging for clothes.  “YOU look sick,” my husband said.  “Drink a shake.”  And I did.

www.meghanleigh8903.isagenix.com

And it all came together for me.  I am down another size since then.  I have begun walking more.  I weigh what I weighed junior year of High School and I don’t intend to ever look back.  I am able to endure more stress, with greater ease.  I have stopped all diet soda.  I drink green tea and water.  I don’t snack much.  I eat better than I ever have in my life, and it’s easier than ever before.  The nutrients I get between that AM shake and my lunch time bar are more than I was getting in days with my old lifestyle.

I get happy when other people are happy.  I get pleasure watching as people remember what it’s like to feel good again.  I enjoy sharing stories, and telling people about a company that I feel strongly “got it all right.”  And they pay me too!

I am constantly telling Meghan that Cowden’s Syndrome does not define us.  But, in fairness, actions speak louder than words.

It’s been months since I was told to find my “Happy Thought,” and I hope I never forget that day.  While we still have our ups and downs it serves as a reminder for me that I am no good to those I love unless I find happiness myself.

Meghan and Felix – they will always be my happiest thoughts.

But I love my family, and God, and exercise, and nutrition, and cool breezes and music, and flying birds, and summer…

I strongly encourage you to find your “Happy Thought.”  It’s tough to start looking when a 10-year-old calls you out.

Loving my heart - outside my body- my biggest happy thought.

Loving my heart – outside my body- my biggest happy thought.

Portrait of Courage

You-Are-What-You-Think1

We have a short window of time from the point we meet someone to make an impression on them.

Think about it.  It happens all the time.  You pass by countless people, on line, in the grocery store, the receptionist at the doctor’s office…  And often, within moments you either remember a rude interaction, or you forget that they even existed.  The brain has to protect itself to some extent.  We can’t remember everyone.

But then there are some people you can’t forget.

I met her in the jewelry store a few months back.  I was buying a bracelet for my girl on a particularly tough day.  We struck up an easy conversation.  She was young, bright, and articulate.  She was friendly. She asked about my daughter and I shared.  I explained Cowden’s Syndrome and some of our most recent endeavors.  Then she nonchalantly told me she was a cancer survivor.  Melanoma she told me.  She was 22.  She told me she planned to be a teacher.  I imagine she will be a great one when it’s time.  At some point I brought up our trip to Disney, and how it might be time to take a break, and save some money.  She told me – wise beyond her years – that the bills will always be there.  Go.  Enjoy.

hope and spoon

Wednesday night I went into the jewelry store again.  I struck up an easy conversation with another employee.  I wanted to get a necklace repaired for Meghan.  It had a “hope” ribbon and a spoon.  She asked about it and I explained again about Cowden’s Syndrome, and the Spoon Theory.  When she brought me the necklace she wouldn’t take any money.  Instead, she offered me a “pay it forward” opportunity.  She showed me a “gofundme” page on her iphone.  She explained that this young girl, now 24, was battling stage 4 malignant melanoma, and if I felt so inclined, I could contribute there.

My heart began to race.  I recognized this girl.  She was the one, the cancer survivor who had helped me months prior.  I asked a million questions, rapid fire.  The kind woman answered them.  I was stunned.  A melanoma survivor, she found a lump a few months ago, which led to a CT and PET scan, and the determination that the melanoma had spread.  There will be treatment.  She is tough.  She will fight.

24 years old.

My sister is 25.  My brother is 25.  My cousins are right about that age.  They are all at various points of setting up their lives, not fighting for them.

She could have been anyone.  This girl in the jewelry store.  But she was dynamic.  Because apparently that is who she is.  She is the person that sticks with you.

Read her story here. http://www.silive.com/sports/index.ssf/2014/06/college_of_staten_island_to_ho.html#incart_river

And if you are so inclined, do what you can to help.

be the change

That is a conversation Meghan and I have all the time.

Life is not easy.  It is often unfair.  Frequently she feels like crap, and always she seems to hurt.

Yet, I tell her all the time, you have a short window where people will make a judgement about you.  It’s not fair either, but it’s true.

And when you live your life chronically ill and/or in pain, you may sometimes feel like you have to lie.

But I am helping her find the balance.  Ways that she can still be honest about what she’s going through, and say what she means, with an upbeat delivery.

i am one

Meghan has been blessed with a beautiful elementary school experience that spanned  6 years and 2 schools.  And although we elected to change schools at the very end of fourth grade, she can reflect and see the positive experiences gained in both places.  It seems everything happened as it should.

And in third grade, one of the roughest years of her life, she was met with one of the most compassionate women I will ever know.  A gifted teacher who cared so much more about the child than the curriculum.  And this year, when there was loss, deep loss, and surgery, and more major struggles there were several excellent women in her path as educators, and sources of strength.  And again, there was one with a sick child of her own, who just “got it” from the beginning.  My gratitude knows no limits.

to teach

Today we sat for a beautiful moving up ceremony.  Everything was perfect.  The length and content of the ceremony carried out through the careful precision of true professionals.  The children were calm and well-behaved.  Everything was smooth.  They all made it look easy, but I know all too well that its not.

Thirty years ago I walked across that same stage.  Today a lot of things came full circle, and after 17 plus years of teaching in my school, I sat in the seat of a parent, and I could not have been more proud.

She received two medals for school service, and she was beaming.  Then they called her name for the “Portrait in Courage” Award.  And the tears flowed.  Mine – not hers.  So touched by the time it took to match my child with an award that was a perfect fit.

See I always knew she had courage.  And I think most people who meet her would never deny it.  But lately, struggling with the pain, there have been some dark days.

couraqge 1

So we talk alot.  And I hope and pray that my words get through.

I tell her what a gift she has, that people view her has positive, and courageous.  I tell her that just because I happened to agree doesn’t mean the responsibility ends there.  When people view you this way, they look to you.  They feed off of your energy.  You inspire them to be better people.

It doesn’t mean you have to be positive all the time, because we all have our days – but it means most of your work has to be upbeat.

Today she hurt.  As she always does.  And I could see it.  But she never said it.  Tonight I felt her knee, and that all too familiar pulsing seems to be finding its way back.  She asks me not to hug her.  Especially in the morning – because my touch hurts.  There are dark circles under her eyes.  But we went out all day today, as a family.  And she was amazing.

She held that plaque in her purse.  She wore her medals.  She smiled.  She looked people in the eye.  She spoke.  She lit up rooms.

Danielle, from the beginning of my story, has never met Meghan.  Yet to me there are so many similarities.  I told Meghan all about her.  She gets it.  She gets a lot of things.  And as I struggle to help her find the gentle balance at 10 years old, of being positive and honest – I see role models for her in our small community.

“Portrait of Courage” indeed.  As her teacher said, she has endured more in her first decade of life than most, and is a force to be reckoned with.

meg awards

For Meghan, for Danielle, and for the others who we cross paths with every day – you inspire.  You lead by example.  You ARE changing the world.

Thank you.

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.

Groundhog_Day_(movie_poster)

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.

web

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.

confused

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.

4740897520_door_jam_xlarge

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

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